Triple Negative and Oncotype Dx testing?

Khickman

Hi Everyone,



I was diagnosed with triple negative breast cancer on 11/26, had a bilateral Mastectomy with tissue expander placement on 2/22, and was staged today. T1a N0 M0. My Drs were waiting for my path report which Was being held up because there was some question as to whether the Surgeon got all of the cancer(the Pathologist couldn't find the clip that the radiologist placed when he did the biopsy) also, according to the MRI my tumor was 1.5+ cm, but the pathologist said there was only a .5mm malignancy. I'm also a little confused, because my oncologist, whom I've just recently met is now wanting to do Oncotype DX testing? Can someone please explain why a test like this would be ordered if I'm triple negative? I've been TRYING to stay positive, but it seems like Murphy keeps rearing his ugly head.

TifJ

I'm certainly no expert, but I thought it was not necessary. Chemo is usually recommended for all TNs so why bother with the test? My onc told me there was no reason to do it as I am triple negative too. I am even 3% positive which he considers to be negative. Your stats are very similar to mine although I am Stage 1b. I hope someone else comes along with some more info- I am curious too even though I am 2+ years past my final chemo!

wildrumara

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. 

Khickman

Thanks for the reply TifJ! I'm still really new to all of this and I'd be the first to admit that Google has become one of my best friends lately. Even being in the health care field, All of this is really confusing and a little bit overwhelming for me. BTW, that's what's thought also. Triple negative is a completely different animal, and Chemo is supposed to be the first line of defense, but he's saying his course of action depends on these test results. I also have a STRONG family history(mother, sister, aunts, and cousins all have had BC). Still waiting on the BRACA testing to come back, though.

stride

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.

TifJ

khickman- 1 more piece of advice- stay off the internet!! Unfortunately alot of the TN info out there is outdated and frankly just scares the crap out of us. I only rely on info found here ,on TNBC Foundation's site or my oncologist.

I find it weird that he is basing his treatment plan on this test when chemo IS our only true defense. Maybe for some reason he will determine which chemo treatment is best for you (although I'm not sure how that has anything to do with the test!) I would love to hear what your doctor says regarding your test results! My best wishes to you!

Stride- that is what I was told too. My insurance would not cover it even if my dr. ordered it because I am TN.

InspiredbyDolce

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

Hi all,

I have been reading the tnbc blogs for awhile now and only have found one other person with similar stats to mine (Stride). When I had my lumpectomy, the path report said er+, PR+ her-. They decided to do the oncodx test on me and everything changed. Onco test said er-, PR+, her-. The PR stat was only slightly in the positive and within the range of error. My onco decided to treat me either way with 4ac, followed by 12wkly taxol. We went with Wkly taxol as I have fibromyalgia and some arthritis. I just wish I knew what exactly I am either, the very rare er-,PR+ or triple negative. I am assuming I am closer to triple neg. at this point. I guess I am not sure how to feel about the oncodx test as it gave me more questions than answers. I am also confused as I am 2cm,grade 2, sentinal node neg. Although I am very glad my node was neg. I am still confused, I see most triple negs. are grade 3. Seen on sites, even though PR slightly positive, still hormone positive. Other sites say, no error on report. Another issue, when waiting for oncodx results the results were delayed due to glitch in their system? Not sure what the glitch was but doesn't help my situation AT ALL. I guess, all in all, oncodx test left me with more questions than answers. Just got done with ac and starting taxol 4/3. Nervous about side effects though. By the way, Brca 1 & 2 negative. Reaccurance score of 30 with oncodx test. I dont doubt my treatment plan, just wish i wasnt in the UNKNOWN ZONE. Wishing you all the best.

teresa008

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.

Sandy65

Teresa008,

Thanks for your response. Can you tell me why you had mastectomy vs lumpectomy? My onco is okay with just a lumpectomy but I am wondering if they shouldn't have just done the other. I had the lumpectomy done when they thought I was ER/PR +. Thanks for any insight. Take care.

teresa008

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.

Sandy65

I wish now that I had both done too. That's why the testing is so frustrating. Had I known then I would of opted for both. I am small breasted too. I would feel better if both were gone. Not much I can do now except hope for no reoccurrence. Thank you for your support. Wishing the best for you.

teresa008

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.

gillyone

teresa and sandy - I am interested to know why you feel a BMX would be your choice if starting over. Do you feel like this because of your TN status? I am wondering what information you have read/been given to make you feel this way.

teresa008

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

Thanks for responding teresa.

Sandy65

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.

schatzi14

I am the same...Worries me too! Even though I had chemo and rads PLUS Anastrozole for 13 months, I am basically TN at 2% ER+.

Sandy65

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.

teresa008

I would echo that Sandy. More testing seems to be the ticket.

Luah

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.  

Sandy65

Luah,

I think I read somewhere that mri's are helpful but not always accurate with dense breasts. I had my first taxol treatment today and seen onco. She said she is still putting me on tamoxifen because even though oncotypedx testing said er- and barely PR+ my original testing of lump after surgery showed me patchy positive for both. I don't doubt my treatment plan, just wish we had some more and accurate info beforehand. Take care.

heartscontent7

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.

wildrumara

Hi there -  Well, Lisa lives her life, that's for sure.  I don't think she has gone to an all natural diet, or takes any special supplements, etc... I know she is active, and keeps her weight down.  She loves to drink, so she definitely hasn't given up alcohol!!!    I do know that she was part of a clinical trial when she was diagnosed and she ended up taking the drug Avastin, which was the drug in the clinical trial. , That has now been taken off the market for breast cancer actually due to other health problems/SEs women were having from the drug.   She was 41 when she was diagnosed and went through treatment so I think because of her young age and healthy status, she did not have any SEs and has not suffered from any long-term SEs from the Avastin.   I've always wondered if that drug is what truly has kept her recurrence free for 3 years.   It is true though, if you have triple negative and you make it three years without a recurrence, you should be in  pretty good shape. 

I have another friend who is triple negative and has had a rougher go of it, but she started with a pretty large tumor.  What kind of chemotherapy did you have?   Have you heard about the drug Metformin??   Some gals are taking that drug off label.