Triple Negative and Oncotype Dx testing?

I am not personally triple negative, but a good friend of mine was diagnosed back in 2009.  She also had a smallish tumor also, but did have 1 or 2 positive nodes.    I don't remember all the details, but for some reason, they did an oncotype test on her......I have a feeling at first they thought she was slightly ER positive, but in the end, it was definitely determined that she was triple negative???    Anyway, she did have an oncotype test done before they made the official diagnosis of her being triple negative and it came back at 47, I believe.   She has been doing very well since her diagnosis....going on four years now!  Women who are Her2 positive are also not routinely tested with oncotype. 

My oncologist tried to get oncotype testing for me, but the company that does the testing said they could only do it on ER+ samples.

My Oncologist retested my slides through every known measure out there.  And when I was trying to get a 2nd opinion on Tamoxifen, the 2nd opinion Oncologist ran the Oncotype DX test on me.  When the lab called me to confirm something, they told me all about the test, and how it is different than the GenOptix test.  One is quantitative and one is qualitative.  You can find out more by calling Oncotype DX.  They let you speak directly to a lab specialist and they are not shy about speaking in technical terms, if you prefer that.  They were very intelligent and forthcoming with answering all my questions.

Insurance paid for my Oncotype Dx - it was approved without an issue, and the lab didn't speak to me about any prequalification of having to already have a suspicion of ER+ to be tested.  I do think there are a few variations of the test, one was more involved than the other.  So I think it could be maybe be an additional test that people might be having problems with approval?  I only wonder of this because when I went for BRCA testing 2 weeks ago, there is the original test and then an additional test they do for $700, that used to be questioned by insurance companies, but now is rapidly being approved along with the first part of the test.  So maybe it was something like that with Oncotype Dx not being approved for some people.

My Oncologist had me on Tamoxifen for only 1 week, because the other tests pointed to a possible 1% chance of ER+.  However, when he found out that GenOptix was now the newest state-of-the-art test for an even more determinate diagnosis of ER+/PR+ status, he spent an entire day, talking with the hospital, the lab, and doing what he needed to get my slides there.  This test by GenOptix, from what he told me, is the latest greatest detection measure of analyzing an ER/PR status.

He already knew I was classified as TNBC, so we went ahead with chemo protocols for TNBC, but the additional tests were to find out if there was any implication I might be a candidate for Tamoxifen. When he mentioned chemo to me, he said "we are leaving no stone unturned."

I would find out why your Oncologist is running the DX test, and if it's to determine the ER/PR status (if you are on the cusp), then I would ask him about the GenOptix test. I felt great relief having a final determination on the matter of Tamoxifen based on this newest test.  By the way, Oncotype Dx did show me as Triple Negative.  GenOptix was developed because more than 20% of women are misclassified, according to GenOptix website>

Here is their site for more information:

http://www.genoptix.com/nexcourse_breast_ERPR.php

Sandy65, mine was also grade 2, so not ALL TNBCs are grade 3. My Estrogen is 1% positive so I'm considered TN. We are all different and our tumors are different, so please don't read too much into someone else's experiences or treatments.

Take care and best of luck to you.

Hi Sandy65,

They thought that I was ER/PR+ when I had my mastectomy, too. We did an MRI and the tumor looked larger than it did on the ultrasound and I have always been small-breasted, so it would have taken way too much of the breast so it seemed like the logical solution. I also did not want to have to worry about there being any more little cells wandering around in there trying to start trouble again! Not that there aren't in the other breast or somewhere else in my body, but it did make me feel a little better. Had I known then that I was TN I would have had them take the other breast, too. I so do not want to go through this again ever.

Take care and the best of luck to you.

Seems to me you should be able to at least ask your ps about having it done now, if you wanted to. Part of this disease is ongoing for the rest of our lives and they do recognize that.

Speaking for myself, once I found out how aggresive of a cancer TN is I would have felt better with the other one gone, too. My right breast is full of fibrotic (sp?) cysts. At the time, when we thought it was ER/PR+ my oncologist at the time told me that 99% of the time these cysts don't turn into anything. If I had known about the TN status then I would have chosen to have the other one removed then. I may still choose to, in the future.

Gillyone,

I feel the same way. My breasts are very dense and it is hard to detect BC in dense breasts and I have fibrocystic breasts so every bump makes me nervous. It would just be a relief to not have to worry so much. I think I am closer to a TN and that is more aggressive and worries me.

Maybe if the procedures were different. They remove the lump and call it done. After they have it out they see no reason to take the whole thing. I didn't have a choice and when I brought it up they seem to think there is no reason to remove the whole thing now. I was lucky enough to have clear margins but I am still worried. Wish they could do more testing somehow before surgery so we have a choice. Wishing you the best.

With Lx, they remove the diseased part of the breast, and enough healthy tissue around to achieve clear margins. An essential aspect of this treatment (and seemingly especially beneficial for TNs, given recent evidence) is local radiation. 

My tumour was not picked up on routine mammo and for 2 years after treatment, I insisted on getting a breast MRI annually.

As for the OP's question, my undersatnding of oncotype testing is that it is used to determine whether or not chemo will have benefit for ER+ tumours. I don't understand why it would be  helpful for TNs. With rare exception, we get chemo anyways; our tumours are aggressive so they respond well to chemo.  

Hi Wildrumara,  I'm wondering if your friend has any advise on how to survive triple neg bc.  I was diagnosed a year ago, 1.5 cm tumor, micromets in one lymph node, oncotype 42.  Everything I read gives a very bleak outlook - 52% relapse within  5 years, although today my surgeon says if I make it past 2 years, I'll probably be ok.