Question about estrogen-receptor status

kdavis1163

Who does the testing to figure out your estrogen receptor status? And also HER2 status?  I remember during my appointment with my breast surgeon, I said something about estrogen receptor status and I can't remember exactly what she said, but it was something to the effect  that all cells are hormone receptor positive in pre-menopausal women.  ???   I was very nervous during my appointment, so maybe I'm not remembering that right.  

 But then I started thinking, maybe this is something that is usually discussed with the oncologist rather than the breast surgeon?  

 I am having a lumpectomy on the right breast and also mirror image biopsy of the left breast on Sept 15th.   I'm also fairly unclear as to how they know they have gotten all the LCIS out of your breast. I realize it's supposedly confined (in situ) to a lobule, but how do we know it's not in another lobule?  I just don't get that.  

 I'm supposing I should be calling my surgeon and discussing this further.   I'm trying not to stress over all this because I'm going on vacation this weekend.  The first week after diagnosis, this was all I could think of 24/7.  Now I'm trying not to, because the 15th seems so far off, but maybe I should be thinking about it a lot more.   

Texas357

I learned my esterogen receptor status and HER-2 NEU status after I got the pathology results of my biopsy. I got those results from my breast surgeon. So if you won't be getting a biopsy first, you may not get those results until a 4-5 days after your lumpectomy. Also when you get your lumpectomy, the pathologist will also look for "clear margins" indicating that they got all of the "bad" cells.

diana50

they should do a pathology report on the biopsy. that is something you can ask for which will give you the details of the tumor and maybe answer your questions.  it is all so overwhelming in the beginning....so hang in there.  your qestions are really important so don't be afraid to ask the professionals taking care of you.  hang in there.

diana50

ccbaby

Just as the other ladies said, you will find out when you get your pathology report back. I am pre-menopausal and I am Estrogen Receptor and Progesterone Negative. It can be either way with pre-menopausal women, or you could have one positive and the other negative. If this is bothering you, you definitely need to call your surgeon to discuss things to have a better understanding. Do you have an oncologist yet? He/she will be able to explain it all to you probably better than the surgeon. 

leaf

Yes, the other women are right.  It should be on your pathology report.  If you haven't gotten your pathology report, then ask for it.

LCIS is a strange disease.  Unlike DCIS, or invasive breast cancer, they do NOT try to get 'clean margins' with LCIS - at least 'classic' LCIS.  (There is the very unusual pleomorphic LCIS which is thought to be more aggressive than classic LCIS.  They should state what kind you have on your pathology report.)

They do not try to get clean margins with classic LCIS for several reasons.  Among them are:

a) LCIS is not reliably seen on mammograms, ultrasounds, or MRI.  LCIS is usually multifocal (meaning there are usually several different spots of it in one breast), and is often bilateral (meaning it is often in both breasts.)  This means that even if a breast surgeon was trying to remove all the LCIS, they couldn't do it, because they wouldn't know what to excise, and be sure they 'got all of it' - to make 'sure' they'd have to do a mastectomy.

LCIS is often found not at the 'lesion of concern' ( i.e. the microcalcification, lump, or abnormality that prompted the biopsy), but adjacent to the lesion. 

The purpose of excision after a fine needle or core biopsy is not to remove the LCIS, but to make sure there isn't something worse (i.e. DCIS or invasive) going on in the area.

b) It doesn't really matter clinically in classic LCIS whether or not one removes all of the LCIS.  For the LCIS women who subsequently get breast cancer (i.e.DCIS or worse), the new breast cancer is often in areas that seemed normal previously.  So even if they find only ONE spot of LCIS in one breast, LCIS puts BOTH breasts at higher risk.

They now think that in a SMALL number of cases (I can't find anyone who is willing to define small or put a number on it), LCIS may be a NONOBLIGATE precursor for cancer.  That means the LCIS spot is NOT DESTINED to become cancer, but in a SMALL number of cases it may actually become cancer.  In most cases, if you look at the LCIS women who went on to get DCIS or invasive breast cancer, the DCIS or invasive breast cancer is in an area that looked previously normal.

LCIS is a weird disease.

Kdavis: most LCIS is ER positive.  In this series of 50 cases, all were ER alpha and beta positive. http://www.ncbi.nlm.nih.gov/pubmed/17543077

AliceJean

Hi friends,

I had 4 nodules removed from my neck and biopsied. Pathology says they are 100% ER positive. Another lump removed from my mast. incisonal area in Dec. '07 was only 5% ER positive, so my onc took me off Faslodex, and I have had no hormonals since then. My original biopsy said my tumor was over 50% ER positive, so after chemo I did Tamoxifen, followed by Aromasin, until the bone and lymph node mets were discovered, in Jan. '07. Which would seem to indicate that the cancer cells which grew into the mets were not affected by the hormonals. I had another nodule from my neck biopsied at that time and pathology said it had the same receptor status as the original tumor. I am puzzled by this new finding and now I am wondering if there has been some mistake somewhere along the line? Or is it possible that the ER sensitivity can change back to positive so dramatically in the absence of any form of hormonal therapy?

leaf

Well, I don't know much about invasive cancer, let alone mets.  But you may find this paragraph interesting.  It is from a paper from 2001. Things may have changed since then, but I bet heterogeneity can still be a problem.

"There are several issues regarding the ER status of tumors.One issue includes quality control and how accurate the measurementof ER is by each laboratory. The immunohistochemical assaysmust also be done with positive controls, and this is not usuallyreported. There are data that report a high false-negative ratewith immunohistochemistry (IHC).⁸ Unpublished data show thatthe results of 15% to 20% of IHC analyses performed in the UnitedStates and Europe are reported as ER-negative when they areactually ER-positive (C. Allred, personal communication, April2001). Also, because many of the tumor specimens are very small,the samples may be inadequate to determine ER. Because tumorsare heterogeneous and not all breast cancer cells express ER,the positive cells may be missed. A carefully performed studyof almost 2,000 patients found that IHC was superior to theligand-binding assay because of ease of use and, most importantly,its equivalent predictive value for response to adjuvant tamoxifentreatment.⁹ The results of this study found that as few as 1%to 10% of weakly positive cells were adequate to confer an improvementin disease-free and overall survival in women treated with tamoxifen.Therefore, a small number of cells positive for ER may be adequateto predict a response to hormonal therapy, but many laboratoriesmay report the results as negative."http://jco.ascopubs.org/cgi/content/full/19/suppl_1/93s

Anonymous

Kdavis---In everything I've read it states that most LCIS is ER positive. They initially said they would test my receptors after my lumpectomy, but then didn't as the sample was too small apparently (???). My docs recommended I take tamox anyway due to my combined high risk from LCIS and family history ( they had no other meds to offer me at the time (I was premenopausal) and I wasn't interested in PBMs and was willing to try tamox)--I finished my 5 years last fall and tolerated it well overall. Now that I'm postmenopausal, I take Evista for further preventative measures. (I also do high risk surveillance of alternating mammos and MRIs every 6 months and breast exams on the opposite 6 months).

They can't know for sure whether or not they get all the LCIS out or not during an excisional, because LCIS is most often multifocal, multicentric and bilateral in nature. (it's very often throughout both breasts). As Leaf said, the object is not to remove all the LCIS (even though we with LCIS would love it if they could actually do that !!, but to make sure there isn't anything more serious in there along with the LCIS (like DCIS or invasive bc). 

anne