Waiting on Oncotype DX. Scared. Confused. Help!

bestauntever · September 2015

Was dx'd at the end of July with IDC. The onco and bs wanted me to have a lumpectomy and radiation, but because of my large breast size, I decided on a double mastectomy. Am a week and a couple days out. Hurts like a b****. BC does not in any way run in my family (I'm 48 and this was a huge surprise - as it is to everyone, I'm sure, no matter the family history.) The tumor was 1.5 cm (stage 1) and though the biopsy showed grade 1, it is actually grade 3 and he said it was aggressive, but a 'grey area' or intermediate, because we need to know now how to proceed depending on the test he just ordered (oncotype dx.) Nothing found in in the lymph nodes. Er/pr positive (highly), and her2 negative. Nothing was found in the left breast, and only the one idc in the right breast. So now I wait for 2 weeks until it comes back.

I've read so many different accounts - people with stage 1, grade 1, but end up needing chemo cuz of the high score on test, or other people having stage 2, grade 2 with micromets in lymph nodes and not needing chemo. There just doesn't seem to be any rhyme or reason.

I guess I'm just ranting because I am scared. Glad the tumor I gone, but wondered what other people have experienced with something like this. Or does it even matter, because apparently, we are all different.

I don't know. Any thoughts are appreciated.

Warrior_Woman · September 2015

Nothing is worse than the waiting, Chris. I'm sure you know this by now. Once you get the results you and your MO will devise a plan. And once you know the plan you'll deal with it whatever the path may be. And you are so correct. There is no rhyme or reason. The good news is that the oncotype tests gives nformation we didn't have years ago and more individualized treatment decisions can be made. Hang in there and wishing you a low score.

Meow13 · September 2015

Everything was going well but then my oncodx came back 34. I was told my miotic rate was 1 I was 95% er+ and less than 10% PR so pr-. It didn't convince me to do chemo. Then a friend of mine got an oncodx of 4. I was jealous of her score not 6 months later she had a bone met. I couldn't believe it, in hind site she wish she had chemo. But the oncodx also gives you an idea if chemo will help and a risk of recurrence. So chemo may not have helped her. It will be 4 years for me next month. Good luck to you.

Free123 · September 2015

bestauntever, I am in a very similar situation- just several weeks ahead of you- my philosophy was to prepare for the worst- and then hopefully be relieved when the news wasn't as bad as I thought… my lab work from the DBMX showed a high grade IDC and also DCIS (no node involvement though) but my oncotype was a 12... so no chemo.

Since you are ER+ like me, Tamoxifen may be more effective against recurrence than chemo- I am on Tamoxifen and feel NO side effects whatsoever….

bestauntever · September 2015

Thanks for responding, ladies. I guess I was on kind of a 'high' from my mastectomies - you know, it's out of me and hopefully will just take pills now. And that may still be the plan, but it upset me to know that the tumor was now high grade 3, instead of low grade 1 (from the core biopsy.) Made it a little more 'real.' Not that it wasn't real before, but maybe just a little more comforting to know it was slow growing. Apparently that's not how it all works and I'm still learning that. And it didn't seem like the onco was going to order the test until the grade 3 thing on the pathology, which I thought was a given if you have er positive, her2 negative no matter the grade, but I've been reading a lot of women have to ask for it. And yes, it was explained how expensive the test is, so the grade probably helped my insurance (hmo SickTired ) approve the test.

You know, this whole experience is such a new education for me - maybe only 10 years ago, most women got surgery, pills, and chemo as was the protocol and a lot of women who had low grade didn't get chemo who might have benefitted. (Yes, I'm trying to look on the bright side. If there is one.)

Tom Petty is right - the waiting is the hardest part. Though healing from the mastectomies and reconstruction is a pretty darn close second.

I think today I will read some inspiring stories to help me through this. I was given a book at the bs office called A Survivor's Guide to Breast Cancer by Alice F. Chang. She had stage 3 inflammatory bc and went through absolute hell - chemo before, mastectomy with lymph nodes, radiation, still had cancer in lymph, chemo after, and this was 20 plus years ago and she's just fine. In fact, she worked full time and traveled for her job during all this (how???) But I found it inspiring, and a few more other books on my kindle, too. And I'm staying off google!!

Sjacobs146 · September 2015

It does seem that everyone is different. My Oncotype came back at 23 which is intermediate. The combo of my age (48), intermediate Oncotype and lymph node involvement led my docs to recommend chemo "light". I had no hesitation to do the chemo because if I ever had a recurrence or mets, I would blame myself for not doing chemo. My MO did not prescribe Adriamycin due to the risk of developing leukemia. I feel like I've done everything I can to prevent recurrence, so no regrets if it does happen

GiGiGarrison64 · September 2015

Hey Chris,

We have some similarities. I have IDC, stage 1a, no node involvement, 8mm tumor, 50 at DX, and grade 3 little mean a$$ tumor😡. My Onco number came back at a shocking 38...MO never saw that coming (me either). I'm doing 4 rounds of TC chemo. One down and three to go...It's been ok. I am thankful that they didn't send me on my way with a 40% reoccurrence number without chemo. I want to do my part to get my reoccurrence number knocked back. Best to you on your results!

BarredOwl · August 2016

Hi 814911:

I see you are HER2+. From an older post, it looks like you were slated for chemotherapy and herceptin, and recently started tamoxifen. Please try not to worry too much about the score.

In "eligible" patients (hormone receptor-positive, HER2-negative), the Oncotype test for invasive disease provides some information about recurrence risk, and is used to decide whether to add chemotherapy to endocrine therapy.

HER2-positive (HER2+) patients are NOT "eligible" for the test (see link). Perhaps the test was ordered before your HER2+ status was clear?

Formal "Eligibility": http://breast-cancer.oncotypedx.com/en-US/Professional-Invasive/OncotypeDXBreastCancerAssay/PatientEligibility.aspx

For HER2+ patients, under NCCN treatment guidelines for IDC that is ER+PR+HER2, chemotherapy plus HER2-targeted therapy (e.g., trastuzumab/Herceptin) is generally recommended (other than with tumors ≤0.5 cm, where it is an option). So, the test is not needed to decide and is not used.

Also, biomarker tests like this test are used in patients who share important clinical features with patients in the clinical studies that showed the test has value for decision-making. In this case, the studies focused on hormone receptor-positive, HER2-negative patients. Because of this, the OncotypeDX test for invasive disease is used in the hormone receptor-positive, HER2-negative setting, where the test has been shown to have prognostic and some predictive capabilities.

To my knowledge, no study has looked at the relationship between distant recurrence risk and Recurrence Score in a large number of HER2-positive patients. A high score in your case may simply reflect high HER2 expression, grade 3, and proliferation activity, commonly seen with HER2+ disease. Please try not to worry.

BarredOwl

Waiting on Oncotype DX. Scared. Confused. Help!

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