Biopsy ER+/PR-/HER- Now after surgery ER-/PR-/HER- - Huh????

workmother, I'm not triple-negative, but I wanted to offer a comment about your situation.

According to the path lab at my cancer center, my tumor was strongly ER+ but PR- and HER2-, just like yours was thought to be.  In my case, those traits were confirmed by the testing done at Genomic Health in conjunction with Oncotype DX testing of my tumor.  Genomic Health reports an Oncotype DX "score" which estimates recurrence risk, but they also provide an estimate of ER and PR gene expression.  The laboratory technique they use is different from the testing done in a pathology lab, so, occasionally, the results don't coincide.

My Oncotype DX report said my tumor was expressing ER like crazy but was not expressing PR, which was basically the same as what the immunohistochemistry testing had shown in the path lab.

Long story short:  I think it would be an excellent idea to get the tumor tissue re-tested for ER and PR.  I don't know if you can get the biopsy material re-tested; sometimes there isn't much of it in the first place and there's none left over after the first round of testing.  In your case, it sounds like Oncotype DX testing would be justified, even if they don't normally test tumors that are ER negative.  (Their recurrence risk statistics are based on women with ER+ tumors; so those numbers might not be accurate for you if your tumor ends up being triple-negative.)

I am kind of surprised your surgeon said he/she has not seen a breast tumor change from ER+ to ER negative -- only the other way around.  I thought the opposite was true:  tumors that are initially expressing ER (ER+) can stop making the estrogen receptor and lose their reliance on estrogen stimulation.  That means those tumors become "resistant" to drugs like tamoxifen and the aromatase inhibitors. Happens a lot, I had read.  It is possible, I guess, for tumor cells that were originally triple-negative to start making ER; but I thought that was less likely.

Anyone else know about this?  I can't cite any articles or offer any quotes.

otter

Edited to add:  Hi, Ruth.  I see you and I were typing at the same time. 

Now I'm wondering if I should have had mine re tested elsewhere since it seems like errors are made. I'm ER/PR negative but if the news tests showed an error and I was in fact positive, it would change my treatment plan. Right now I'm not doing anything; no chemo, no rads, no medication. If I was infact positive, I'm assuming they would put me on Tamoxifen?

For anyone who comes back triple negative; I would recommend that you have it reread. It might not change anything you are doing now, but you would want to know what your right diagnosis is if something came up in the future (and not necessarily something bad; just if they have new research and come up with new treatment recommendations in the future etc.).

I changed from Her2- to Her2+ between biopsy and tumor removal.  Cancer is not a uniform beast.  The same tumor may have cells that are positive and negative. A biopsy grabs a small piece of the tumor.  Once they have the entire tumor they can do cross-sections of multiple pieces of tissue, which lets them see the bigger picture.  My reoccurence is triple negative and while I suppose it's possible to change from negative to positive, I agree with Otter that normally a change is from positive to negative due to treatment. 

If you are triple negative, chemo is really the only option.  Probably with Grade 3 (fast growing) they would recommend chemo even if you are ER+.  The reason ER+ (sometimes even at Stage IV) is treated with anti-hormonals rather than chemo is that it is more likely to be slow growing Grade 1. 

My treatments were delayed while they tried to figure my path out...  After having a mamo, ultrasound, and MRI had a suspicious area removed on 12/30/09 and it turned out to be Cancer.  Had a double Mastecomy on 02/19/10....Had the two procedures and used two different hospitals....they both used the same slides, as I had clear margins and there was no cancer tumor involved with double mast.  The first Hospital had me ER-/PR-/HER+ and the second Hospital had me ER-/PR-/HER borderline+.  They sent it out for a fish test for a more accurate test....my Doctors were saying I was probably postitve because the first was + and the second was borderline +.   The fish test came back NEGATIVE.  Thank god I had a double mastecomy because otherwise they would be treating me with herceptin - a drug that would not do any good for a Triple Negative!!!  I also had a Third set of eyes look at my slides because I wanted to make sure they go it right.....Always good to have more eyes look at the slides....

Hi Donna,

A FISH test is different from an Oncotype test. The FISH determines your HER status and is done by your lab. Oncotype is done by an independent lab and determines a "recurrence" score--basically how aggressive your personal cancer cells are and how likely you are to have a recurrence in the next 10 years. Oncotype takes a couple of weeks, but it's an important tool to determine the usefulness of chemo in each particular case.

I also had confirmatory labs done. I picked up my slides from the lab and took them elsewhere--it was pretty easy. I needed peace of mind, and confirmation that I actually do have cancer (I still kind of can't believe it, strangely enough, even though I had my first chemo treatment last week). The second lab confirmed everything the first lab said--only a minor discrepancy in margins.

TN is a rough diagnosis...but here's one thing: I was at a cancer lecture a couple of weeks ago and the professor said one thing about TN is that the recurrence rates are very high for the first five years, but then they drop substantially. So if you get through those five years without a recurrence, you're doing great. For ER+ cancers, the recurrence rate is lower but it stays stable forever and never drops. So if you're ER+, you have the same worry in 20 years about a recurrence than you do after 2 years.

I also know someone who was TN and now cancer free--it's been 6 years for her.

You're right about them not doing Oncotype on TN's--it's meant for ER+ tumors. It'll be interesting to see what is decided about yours! Interestingly, my ER results on Oncotype came back different from my lab results, which said I was 100%ER+++. The Oncotype still showed ER positive, but only mildly so--definitely not off-the-charts positive like my lab results.

It makes me a little crazy that this is such an inexact science.

I've been struggling with chemo more than I thought I would. It's been a little rough. Just taking it day by day.

workmother,

I've had biopsy & surgeries at New York Hospital Queens.  My Onc recommends chemo(4xAC every 2 wks & 12xTX weekly) followed by rads.  I am going to see another onc at Sloan Kettering in 2 weeks.  It seems like most of TN gets chemo no matter what statges or LN involvements, but I just want to feel comfortable. 

Hi workmother,

I met with the 2nd onc at Sloan today.  She also wants to test unstained slides, so I have to request it to the hospital where I had surgeries.  She says if it turns out that I have both ER+/PR+ and ER-/PR- she will add tamoxifin after chemo as a long term treatment.  Ahhhh.  Anyway, this results will not change her immediate treatment recommendation which ACx4 & Tx4 so we will start chemo in 3wks. I hope you hear your results soon so you can plan accordingly.  Out of everything wating and dealing with unknown is the worst.  Much love to you.

Hello!

I am awaiting my 1 month checkup and need to get a clear pet scan before my heart surgeon will do my surgery. I am a little freaked out to say the least....open heart surgery was never something I thought I would have to deal with- especially after the cancer diagnosis. I am hanging in there though...with many crying moments.

Workmother... Northport was a great town to grow up in. My parents still live there in E Northport, and my mom is a teacher aide at ENMS..

Thenewme...It would be wonderful if that could happen! Since the radiation, my PS said I needed to wait about 8 months after I was done for my skin to heal to take out the expanders. Apparently the heart thing can't wait that long. Sucks....it really does!