anyone not get an oncotype test?

kika2013

Hi all--I posted this elsewhere but am now seeing maybe this is the right thread for it. I have (had?) stage 1a IDC which may or may not be tubular carcinoma (got a 1 on the Nottingham score, and my original biopsy path report called it IDC with tubular features, but surgery was done elsewhere and just says "IDC"--no way to know if it's just different terminology). My tumor was 8mm, and a 4 overall on the Nottingham Grade. I also had some DCIS with it that was low-grade. My surgeon told me at follow-up that the oncologist she consulted said it was not even worth sending the tumor for the oncotype test as there was no way chemo would be recommended. While this of course makes me happy, I also wonder if it wouldn't be good to have it done to know recurrence rates? Has anyone had this scenario? I will be taking tamoxifen for sure, but just wondering if anyone else had not had an oncotype for this reason. Thanks.

kira1234

kika2013, my tumor was 6 mm and it was tested. Even a small tumor can have a high number. Mine was in the gray area so chemo was left up to me to decide.

kika2013

Thanks. I think I am going to push for the test. You seem to have had a very similar diagnosis to mine. I'm not sure why they're saying this, but I also haven't talked to the oncologist myself yet so we'll see what he says, too.

dogsandjogs

I didn't have the test. In fact I had never heard of it until I joined this group.

GlobalGirlyGirl

kika2013 - I didn't have it. Chemo was a given, but I decided against it. That said, I'm glad you're pushing for it. The more information the better.

Luckies to you! 

Miller1353

I was estrogen negative, so no test for me. I knew I was headed to chemo anyway.

corky60

I didn't have it. It wasn't even offered to me. There was no malignancy detected in the lumpectomy. The stereotactic biopsy must have removed it all. But I still start Aromasin this month.

bluepearl

Grade 1 usually doesn't do well with chemo as chemo works with FAST growing cells. I had an 8mm grade 3 and was not offered the test....which I think I would have gone for even having to pay for it (in Canada). Tubular features if very good prognosis and is one of the three things that add to your grading score......mitotic rate, cell differentiation being the other two. Looks like you had a large number of tubular cells, greater than 75% I believe is the "1" for that...which is good. Stage 1a has a good prognosis....run with that and have no regrets!!!!

owlwatcher

My question is why would knowing the oncotype test score be beneficial if one is not having chemo? just curious.

pupmom

Owlwatcher, good point!

coraleliz

It might sway the decision making process. I was going to decline chemo given the stats my MO gave me using Adjuvent Online. I insisted on getting the test(had to ask 3 times). Would have changed my mind & done chemo for an intermediate or high score. But I had positive nodes & grade 1 tumors, oncotype "4". If it's not going to change your mind or your MOs mind, then there is no reason to have it done.

julia2

I was stage 1, grade 1 mildly ER+, PR-.  I was told I didn't need the test, didn't need chemo, just radiation.  I thought about it and 3 weeks after my surgery decided I wanted the test.  Came back a 33, high, it changed everything, get the test. 

jessica749

Correct me if I'm wrong but I thought the whole point of oncotype test is that the old fashioned pathology just doesn't cut it the same;  that our way of judging with trained pathologist eye is not as accurate a prognasticator as a biological, molecular analysis.

And so, if that is true, you can't say from looking at any stage 1 cancer that it's not threatening enough to merit oncotype ds.  The whole point of the test is that which you thought looked like it was not aggressive could at a molecular level be so. And the opposite, an aggressive looking stage 1 cancer (grade "3") could earn a low score on the molecular analysis...

Rose12

Was not planning to have chemo. Had the test and came back with a very high score. I forget the score think it was in the 60.s. Changed everything. Surprised your Dr. does not want to do the test. It checks all your genes. At least you will know you tried all options available to you. 

bluepearl

I wanted it...asked three times..."treatment plans would be the same" is all I got. "Chemo would be overkill" was the other.....and yet I look at some of the scores here and it worries me. Too late now. Even if your tumor does have a high aggressiveness, is small with clean nodes and no LVI, doesn't that help because it could be three times that size with LVI and node positive and still have the same oncotype score. I don't know. Scared to ask.

Cannylass

Hi kika2013

I was diagnosed March this year, DCIS 25mm and two invasive tumours of no specific type 2.5mm and 4mm (in the same breast). My onc said because they were so small, he didn't recommend the oncotype test for me. It is not easy to get here in Australia. It has to be sent to the US at a cost of about $5,000 australian dollars, no rebate through insurance either. I have had two lumpectomies and radiation but no chemo. I think if I'd read this stuff earlier, I would have requested the test. I am 50 and have an 11 year old and wonder if I've done the right thing. Only time will tell!! am amazed to read how many of you have had the test.

violet_1

I requested they do the oncodx...even w my Bilateral BC..both sides low stage/grade...the onc. was fine about ordering it & insurance paid for it. Mine came back low: 6 & 13.

There is always the POSSIBILITY that stage 1 can come with a higher/surprising onco dx score...it does happen sometimes.

I didn't need nor request chemo...don't think I would've considered it unless my score would've been insanely HIGH & I am not taking Tamox. or having any further treatments for now.

BUT, I still wanted to know my scores...

I'd have pushed for it if they

had tried to refuse...;)

It is a very expensive test, I think that is a lot of the reasoning for the denials--especially with early stagers...





Violet

cookiegal

Kika I think tubular tends to be low oncotype. I know stage ones who did not get it.

kika2013

Hi cookiegal and thanks for your reply. I did end up asking for it (the MO I actually saw at the same place wanted it--who knows why he felt differently, but I was glad he did!). It came back a 5, a HUGE relief to me. Best to you and hope you are well.

lekker

I'm glad you received a very low score! In your case, the OncotypeDX wouldn't normally have been ordered if you truly had a tubular carcinoma. Usually tumors of low grade, "special type" (including tubular), node negative and under 1cm would not receive chemo per NCCN guidelines so there would be no reason to order the test.

Ridley

Hi Kika -- so glad to hear you got a low score -- I have multifocal, but the largest area was 7 mm and similar to yours -- grade 1 (4 on the scale).  Med onc was not going to order oncotype (said I didn't need chemo), but said he would if I wanted him to.  I did, so he ordered.  I had 10 areas of IDC and ILC, so I wanted to make sure I didn't leave this stone unturned, since I seem to have a great ability to make these little suckers.  I don't have the results yet, but am keeping my fingers crossed for a low score.  I'll do chemo if need be, but hopefully won't have to.

Anonymous

I did not have the test. They said no chemo, so no reason for the test.



And of course it's just one more thing to "what if" about now!

violet_1

Dulci,

They don't routinely w my stats either ( I think we have the same)...but increasingly enough my 2nd opinion Onc had recently returned from a conference where they were discussing a tough unusual case w my stats. The patient's Oncodx score came back REALLY HIGH so her team was

in a quandary as to what to recommend her. Chemo or not...?

I was happy to just KNOW what my scores were...cuz I'd only just heard about the test...curiosity won out for me.

Kika, good to hear yours was low...:)

Violet

Obieann

Has anyone had the new test mamma print. It looks at 72 genes as opposed to the 20 that oncotyping looks at. It also separates luminal A and Lumimnal B. It categorizes 10 year recurrence risk into high and low and doesn't have a intermediate category. Here's an example of how cancer treatment can so often lag behind the science. Mamma print will soon become the gold standard when scientific data at conferences starts to create a tipping point

Beanpole

My Ocologist said I wasn't a good candidate for it because mine was low grade. I have always wished I had insisted. I am someone who really likes having all the information possible.

Blessings2011

Multifocal DCIS, largest area .6 cm. Multifocal IDC = one tumor at half a millimeter, the other tumor at one and a half millimeters. Verified on biopsy, but completely gone on final path report. ER/PR+, Her/2-. BMX w/ recon; no rads, no chemo, no Oncotype test, no explanation of why not except for "You didn't need it."

songbird68

No oncotype for me either, they said the same as Blessings - I didn't need it. I was multifocal three tumors, largest 1.6cm. No rads, no chemo.

I did have a very low Ki-67, which means the cancer was not very aggressive. Please correct me anyone if I misunderstood that!

Bren-2007

No chemo was recommended for me as a Stage I and the oncotype test was not done. I was curious to see what the results would have been.

Bren

ritagz

I was given a "proliferation rate" of less than 2, so my doctor said that we do not need an oncotype score as it would not be significantly different.

Does that sound right?

MsPharoah

Ritagz,  it doesn't sound right to me.  The oncotype test measures more than the proliferation rate and as a result, can identify other characteristics of your tumor that might indicate chemo is a benefit.  I guess I don't understand why a doctor would not want to have all the best info before they make a treatment recommendation.  My tumor characteristics were very favorable but the oncotype dx came back a 24 and I did chemo as a result. 

MsP

ritagz

thanks for the information

I will speak to my doctor and ask to get it