Oncotype DX Score 67

Izzy325

I want to start by thanking everyone who invests so much of themselves in this forum. For the newly diagnosed, our minds whirl with new information and fears. This gives us a place to settle our minds and learn a little (or a lot) as we journey through this adventure. I have read a bit of the threads about Oncotype scoring. I noticed that the HER+ entries do not refer to this scoring much as opposed to the others. My score was 67 (34% recurrence), HER+++. I just haven't seen anyone post a score that high and I guess I am looking for some reassurance that I am not alone.

When I met with my med onc, I remained upbeat and ready to get started. She made statements suggesting this is very serious and I needed to take it seriously.... Which I am. Perhaps she felt I was in denial. I just choose not to anguish over things I have no control. I have now started TCH 2 weeks ago and hanging in there. So just looking for reassurance about the scoring.... If anyone scored high, too. Thanks!

voraciousreader

Izzy... I am sorry to hear about your diagnosis. Dismiss for a moment what your doctor said about this situation being "serious."  All cancer diagnoses are "serious."   So are diagnoses of heart disease, hypertension, diabetes...and I can go on and on and on!

First off, I do not understand why she ordered the Oncotype DX test in the first place since you are HER+++.  Most often, if you are HER+, then you are a candidate for Herceptin which is usually given with chemotherapy.  The Oncotype DX test was specifically designed to see which people might not need chemo. So, the answer to your question why you don't see that many people with that high of an Oncotype DX score, is because the test is usally only prescribed when it is needed to determine if chemo is necessary.  I would guess that IF many HER+ people had the Oncotype DX test done, then their scores would be as high as yours.

I hope you will get a second opinion, or at the very least, find a doctor whom you are more comfortable working with.  There are terrific treatments for HER+ tumors. 

Thoughts and prayers to you!

skmarm

Izzy,  you sound like you have a great attitude towards treatment and I echo what voraciousreader says - get a second opinion if you are not pleased with your oncologist's attitude.  I want to hear everything my oncologist has to say about cancer, treatment, side effects, etc...but I pay for his services and I deeply resent him venturing into any conversation in which he judges me...and I told him so!  He is my doctor, not my therapist, and I don't care about his opinion of my attitude.  I'm a grownup and my attitude belongs to me.

That having been said, I agree with voraciousreader about the Oconotype scoring.  Before my surgery, my doctor could feel my tumor and knew that it was at least 1.5 centimeters.  He was very clear that chemotherapy is recommended for ANY tumor over 1 centimeter, regardless of its pathology (and many, but not all, oncologists agree).  With the size of your tumor, I would have thought that chemo would also be a given.  Also, the HER status should have been determined before it was submitted for Oconotype, because its HER status takes precedence over its Oconotype score.  Even ladies with smaller HER positive tumors are being recommended for chemo and Herceptin as it dramatically reduces their chance of recurrence (which is significantly higher for HER positive tumors, regardless of size).  It does not make sense to me, given your tumor's size and HER status, why your doctor ordered such an expensive test (Oconotype).  It wasn't going to give you any additional information that would have impacted your treatment.  

My doctor entered my pathology information on AdjuvantOnline and told me that my chances for recurrence without chemo/herceptin were about 40% and with treatment were about 17% (1.7 centimeter tumor, 2 of 25 nodes positive).  My guess is that most all HER positive breast cancer falls at least around this much.  Fortunately, chemo is particularly effective on aggressive cancer and herceptin is a godsend.  When you are finished with Herceptin, there are other exciting clinical trials available for HER positive breast cancer - vaccine trials and Neraptinib.  

There is no good cancer...but much is being done with the type of cancer that we have and while it is all serious, choosing to have a positive, can-do attitude that keeps you faithful to your treatment and your health is the first requirement - you seem to have that in spades!!!!  Kelly 

AnnNYC

Izzy, I agree with voraciousreader and Kelly (skmarm) -- the OncotypeDX test is not relevant when someone is HER2 positive.  (However, some oncs are ordering it as a kind of "back-up" to the original pathology report on ER and PR receptors, so maybe that's why your onc ordered, just to get "two opinions" on the pathology.)

In any case, either being HER2 positive OR having such a high Oncotype score are reasons to have chemo.

orange1

I agree with the others - the reason other Her2+ don't post oncotype score, is because the test is almost never performed on Her2+ tumors (and not indicated for Her2+ tumors) since it is virtually a given that the result will be high.  Therefore chemo + herceptin is automatic for all but the most tiny tumors.

Izzy325

Thank you for your replies. I was starting to suspect that was the reason. When she shared the score with me, she said she did the extra testing to verify the first results. And the first results were more "yes no" on the ER and PR. She like to see quantitatively how positive someone is as this helps with any grey areas of decision on type and length of treatments.

I just want to clarify that I really like my doctor. I think it was "good" that she cares that I am mentally ready for everything. I am not sure if she was doing it for my piece of mind or hers but I think it's important to treat the whole person. I spoke with my aunt who was treated for BC a couple years ago. Being distant from her, I didn't know everything about her tx. Come to find out she also had the scoring. She doesn't remember exactly but sounds like she was in my range too and HER pos.

So again, thank you all for sharing with me!

mmm5

I work for a company that has a partnership with this company and they have said many times that all grade 3 Her2 tumors come out with very high oncotype, I had mine done as well (really didn't need to as it did not change my treatment) but has a very high score 48.

Even though you have a very high oncotype you actually have less chance of recurrence then your none Her2 counterparts (grade 3)  as with Herceptin an early stage Her2 DX like yours has less then a 15 percent chance of recurrence after a year of Herceptin. 

Jaimieh

Someone that I know from another board came back with 83% risk of reoccurance and I believe her tumor was under 1cm.