ILC and LCIS effect on Oncotypedx

I am sorry you are joining us.

There is no way to know/predict what it will be.

My oncologist swore I'd have a low score; mine was intermediate.  I did not have a multifocal and I had no node involvement.  I know some women have a grade 3 tumor and end up with lower onco scores.  Again no way to know.

Best to you. 

My surgeon explained that the OncoType test looks at the genetics of the tissue to determine probability of re-occurance. Since it a genetic test, it is very difficult to predict. I have ILC with few mets but my OncoType score as 26 (intermediate). I don't think the doctors will be able to predict genetic results anytime in the near future without performing the actual test. I tend to get frustrated with all the doctors and their intuition unless they opt to go ahead and perform the tests that will confirm (or not) their hunch.

On a side note, my MRI failed to show the original dx cancer nor did it show the unknown cancer that was found in the other breast after my mast. I'm not a big fan of it now. Ultrasound was what confirmed my original dx.

My score was 18 which is intermediate but on the low end.  My oncologist also ran 2 computer programs which gave similar results.  I'm sure she used the info from the onco test to do the other programs.  What was different in one of them was that it also included my general health which is "healthy".  Sounds odd that a woman with bc could be healthy but I am.  Still, the results were the same as the onco results.  I decided against chemo because the tests showed a 3% advantage and for me that was not enough of an improvement to warrent the potential damage that chemo can cause.  If I had been younger, I may have decided differently but at 59 I was really concerned about damaging my body with the chemo for 3% results.  Chemo has come a long way and I would not hesitate to have it if my results had been different.

Roseann

hlya: I am going ahead with chemo simply due to my age. That 3% over the rest of my hopefully long life means a little more to me than it might to others. I am 28. With that said, it was still a difficult decision to decide to put myself through that. The thing that finally helped solidify my decision was an area of concern where the cancer had infiltrated a lymph vessel. Nodes were clean but the Onc said that the cancer was trying to spread.

wallycat: I just went in for my bone scan and CT so I don't have the results yet but there was a met count per magnification field of the tumor in the pathology report. There weren't many in the tumor (3 per field). That count was used in the grade. I guess it doesn't impact the OncoType significantly but just means that the cancer is slower growing.

ImpatientPatient: I agree, everybody's situation is different, and that 3% is just statistically an average score,  which means some people have more & some have less .  But you should make the decision considering your specific situation as you know yourself best.

and I also agree that grading won't affect Onco test.  Oncotype test focus on distant recurrence, not how fast the tumor grows. 

Based on Impatientpatient's situation,  I feel that Oncotype test focus more on each tumor's specific gene biological features.  Even there are 2 x women with exactly the same ER/PR & HER2 status, their scores might come back differently. 

Hi Karenanne,

I had a 1 cm ILC with DCIS in the margins, had an excisional bx, segmental mast, followed my a full mast w reconstruction.  My final path report from the full mast showed lcis(multifocal, with pagetoid spread to the ducts).  My oncotype score was 11, so I'm not sure that the lcis affects the score or not.,

Hoping for a low score for you!

MM

Karenanne: I'm hoping for your's to come back as a 1.

My bone scan and CT came back clean which was a relief but I am on the chemo schedule for Dec. 22nd. I'm comfortable with my decision. I did cry a little after leaving the oncology office yesterday because it suddenly became real. I was ok by the time I got to the surgeon's office though. Nothing to do now but wait and make the most of the weekend coming up.

kmf: So glad to hear you were able to skip chemo. That is a nice relief.

I started chemo on Dec. 22nd. TCx4 and it isn't so bad so far. I had one bad day but consider myself lucky. I'm happy with the decision to go ahead with it. I'm not a worrier by nature but I think I would have always wondered. Thanks for the support of everyone here. I can't imagine making these decisions without a place like this forum.

ImpatientPatient hope you treatments go well. 

Not very nice to have to start just before Christmas.

Will be thinking of you,

Take Care

Cathy

Thanks Ladies! So far so good. I had a few more days with nausea and stomach pain but we got it figured out. My hair started falling out today which was more shocking than I thought it would be but now its ok too. Just rolling with it. Its all we can do.

ImpatientPatient,  It was good to hear back from you, and especially to know that you got the SEs figured out.  I remember when my hair started coming out.  I had it cut very, very short.  It was a windy day, I scratched my head and saw hair flying out across the yard.  Ya, seeing myself bald was a shock. Having hair keeps our heads warm, too.  I slept in a cap because my head got cold at night.  Keep rolling, won't be long before treatment's over.  

ImpatientPatient: I only lost half of my hair after the first TCH treatment, then it started to grow. I got it buzzed when it started to fall out and had to get a touch up the other day. I think everyone is different. I've got several finger nails that look like I'll lose them, but I haven't lost eyebrows/arm hairs/ facial hairs or leg hairs. Just most of the pubes and half of my head hair.

Dear kmf:

I was diagnosed mid- January 2010 with ILC with associated LCIS, node negative, clear margins, ER+, PR+, HER2-.  Just received my Oncotype DX breast cancer assay 3 days ago.  It was a 9 (scale of 0-100) so my medical oncologist said NO chemo as this low risk number for distant recurrence in 10 years indicates chemo would be more harmful than beneficial.  I hope your score is very low, too so that you don't need chemo.  Talk to your medical oncologist about your concerns.

Hi Ladies!  Does anyone know whether having a low Oncotype DX score has any bearing on whether or not to undergo hormone suppression therapy (Arimidex or Femara)?  I really don't want to take either one for five years as I feel great right now and fear the side effects of HT.