oncotype testing for very small IDC

dancetrancer

Hello all.  I was recently dx with a 3 mm invasive mammary cancer (ductal and lobular features), Grade 2.  The oncologist is running the HER2 test, but says that my cancer is too small to run an oncotype test.  So, is it a big deal that I'll never find out my onco score? 

jacee

Mine was grade 1, 7mm, IDC done. I asked about having the oncotype, but since I was node positive, my Onc said No, you have to have chemo. Without the nodes being positive, I think he would have done it.

Mocity

I didn't have an onco test because my Onc said it would be high so there was no need.  I was only 37, strong family history and HER2+.... those factors would have affected the test.  So, like Robo47, it wouldn't have changed my treatment recommendation.  My cancer was also very small.  At first we thought it was DCIS but after have a bilateral mastectomy they found a small part that had moved outside the duct.  So chemo, herceptin followed and now hormonal therapy.  Good luck to you!

dancetrancer

Thanks everyone!  So far since it is so small and no nodes positive, she said no chemo (just Tamoxifen) - but we are waiting on the HER2 before she makes a final recommendation.  I was just kinda wondering if my HER2 comes back negative (hoping, hoping), if I need to be concerned that an Onco can't be done.  If not, yay...no chemo, moving forward! 

Does anyone know how long it typically takes for a HER2 test to come back? 

peggy_j

I didn't have oncotype test. My tumor was 5 mm and grade 1 so my MO disrecommended chemo based on that info. She said that since the grade and size are components of the oncotype score, that it was highly unlikely the score would come back high (and even if it did, she would still disrecommend chemo because it was grade 1, which benefits the least from chemo). As you probably know, a score in the middle means "we don't know" if the patient will benefit from chemo. (though trials are being done now to improve this)

Fingers crossed on good results of your HER2 test. I think the results take about a week. (I needed a 'do over' so I had to wait extra long. yippee)

Do you mind me asking, how did you find your tumor? Mine was barely visible on the mammogram. (only seen on the top view, not on the side view, and it was close to the skin. My BS gave kudos to the diagnosing radiologist; she said these small tumors can easily be missed). 

dancetrancer

Thanks so much for the information Peggy!

My initial diagnosis was DCIS (caught on screening mammo - calcification).  It was found to be widespread so I had to have a mastectomy.  Initial path review saw only DCIS, but I had close margins and there was controversy over whether I needed radiation or not, so I ended up getting multiple RO opinions.  Each facility wanted to do their own pathology analysis.  The 4th path analysis caught the IDC - everyone else had missed it.  Kinda scary.  I'm very impressed with that 4th pathologist for going the extra mile for me! 

Janeybw

I had both DCIS and IDC--the IDC component was only 5mm and grade 1 so no oncotype and just tamoxifen.  I am comfortable with that.

peggy_j

dancetrancer, great, glad the info was helpful. Interesting about your experience.I've heard of other women with multiple spots of DCIS choosing a MX.  I can't  believe it took 4 path analyses to detect the IDC. yee. But glad they found it. (and it sounds like you're doing everything right getting multiple opinions). Sometimes I feel like we all need a nice vacation after these experiences....

janeybw, thanks for your sharing your experience too. I'm also on tamoxifen. My MO disrecommended chemo but strongly recommended tamox (esp. since I'm pre-meno). Makes sense to me. 

mooserella

Yay to the vacation, hope you all have clean results.  Still waiting on my Oncotype DX, normally not done with a tumor the size of mine, but this is my second journey into cancer (endometrial, stage IIB, LAVH and BSOP 12/2008) so they didn't want to mess around.  I don't love the thought of chemo, but I'll take that if it will improve my odds of non-recurrence.

Cancer is an interesting ride, but I'd really kind of like to get off.  Too bad that's not an option.  We need to be here for each other because nobody else really understands what it's like unless they have gone through some form of it themselves.  Unfortunately, I have more and more company every year in my friends, family and co-workers. 

edwards750

jacee - typically if you are node positive the oncologist will not order the test but I did have the test done and I did have a micromet in the SN. My oncologist said since it was so small it would probably show up as node negative but they were not concerned about doing additional testing on other nodes because of its size. She told me had it been larger they would have. The test is expensive but I was fortunate that my husband's insurance paid for it. Genomic Labs who conducts the test will also work with patients to help defray the cost. I am glad she ordered it for me because my score came back@11 and I had Rads instead of chemo. If your treatment plan would not change by the test results wouldnt be worth it but if your oncologist is undecided it is definitely worth it...was for me. diane

jacee

diane...even tho I was node positive, I wish I had done the test...just to see what it was. Thanks for the info.

doxie

My memory may be wrong (I did have chemo), but I think I read somewhere that the tumor sample sent out for oncotype testing has to be at least 5mm.  They test the tissue 3 x for accuracy.  Your original pathology testing uses up tissue also, before it would be sent out for oncotype testing.

kira1234

They need way less than that. Accoring to their info they need between 35-60 microns of tissue. that is an extrememly small amount. Here is their info page.

http://www.oncotypedx.com/en-US/Breast/HealthcareProfessional/FAQs.aspx#11

dancetrancer

Thanks for that link Kira!  Perhaps my MO meant that she felt my risk was so small with such a small area of IDC that she didn't feel it warranted onco testing.  All I know is she said it was too small, so I may have interpreted that literally, when actually she felt it wasn't warranted...I'll follow up to clarify - thanks! 

kira1234

If you go to the NCCN you can look up recommendations based on your tumor path report. I was very helpful to me last year. I chose to register as a Dr., but you can get much of the info registering as a patient.

dancetrancer

Kira, thanks.  It says that the Panel considers the oncotype test as:

"an option when evaluating patients with primary tumors characterized as .6 to 1 cm in size with unfavorable features or > 1 cm, and node negative, hormone receptor positive and HER2 negative."

It goes on to say that small tumors < =  .5 cm with negative nodes have such a favorable prognosis that chemo is not recommended.   

So I feel based upon reading this, that I understand why my onc did not order the oncotype.   Hopefully my HER2 will come back negative and I can move forward.  Thanks all!!!

doxie

kira1234 - Thanks for correcting me.  I don't know why I should think I would correctly remember something like that from September when I did my oncotype research.