Need a ONCO DX test but was started on letrozole before surgery

My OncotypeDX 'risk of recurrence (anywhere in the body) within 9 years' number was 3% if I take aromatase inhibitors.

Since aromatase inhibitors "can" reduce the risk of recurrence within 5 years if taken as directed by 42-45%, the arithmetic would make the "risk of recurrence" approximately 5-5.5% if I don't take them.

That's the value of the OncotypeDX. It is both productive and prognostic. It both predicts (1) risk of recurrence and the (2) risk/reward of chemo. And it uses the genomic data from the tumor tissue. So is a personal data point not just based on broad demographic stats like age, health, race or ethnicity. Just what the current science would see as the recurrence risk based on what it finds in that tumor tissue and what science knows so far

Thank you so much for the information. Your summation of the issue is well stated. The information you provided was my understanding but without some of the details. I am HER2 negative. The one thing I didn't know is the necessity for a 2mm piece of continuous tissue, which is why the one lab is telling my doctors there wasn't enough tissue to perform the test prior to aromatase inhibition therapy. I think I need to double-check that both labs evaluate two different sets of biopsies on 5 tumours total. I started on letrozole after both biopsies and 5 weeks prior to surgery for a double mastectomy and lymph dissection. All 4 lymph nodes were negative 🙂 It is unclear whether the doctors understood they were done at different facilities/labs. It also sounds like a specific order needs to be in place to ensure a large enough sample is biopsied for the purpose of this important test.

It seems I have no options regarding getting this test done in some form. I will not accept my Oncologist's plan to wait until possible metastasis. I plan to get 2nd and 3rd oncologist opinions if necessary. My other goal is to share this so as to prevent others from this catch-22. Although I am not looking to finger point and will not, I think the companies' reps doing the ONCOTYPE DX need to educate the surgical and medical oncologist as well as the doctors ordering the initial biopsy such as the obstetrician/gynaecologist. The latest studies are showing promising data on starting endocrine therapy prior to surgery in certain cases. Doctors need to understand these timing issues. I'm concerned and sad I may need to move forward without a clear prognosis, not what I expected. I thank you for your time and interest in this subject. I promise to post any further information I find. Wishing you all well on your BC journeys. Hugs, Randy

I'm glad that you're getting a second opinion. Or more. I had a very plain vanilla EP+, HER2- 5mm tumor removed. Clean margins. Sentinel node biopsy negative. And my surgeon was the head of breast cancer surgery at a top-ranked facility. The oncologist is affiliated with the same institution. But I still got a second opinion. Which, happily,,agreed with my oncologist's recommendations.

It just gave me less chance of later regretting that there was a better treatment path that I didn't bother to look into.

Hi,
I was reading your replies to Randy.
I’m am curious about the oncotype scores.
What # gave you the 3% with the use of AI’s?
If you don’t mind saying.

The OncotypeDX yields two numbers: a Recurrence Score and, the relevant number, a 'risk of recurrence (loco-regional) within 9 years' contingent upon taking either aromatase inhibitors or tamoxifen.

My 'risk of recurrence....' number was 3%

Thank you.
They only gave me one number.
It was 14.
I only know this number meant I didn’t need chemo.

The OncotypeDX report has some other information on it and is designed to be patient-friendly. Please consider asking for a copy. Or you can call Exact Sciences (the parent company) and ask for a copy. They are great at answering any other questions about the test as well.

Exact Sciences is the company for ONCOTYPE DX (see thread below). Definitely give them a call and see if they will accept biopsy tissue.

I’m rooting for you 🙏💗🙏

This happened to several people I know, myself included. But it was never even brought up that I couldn't have the Oncotype because I had started on Arimidex 6 weeks before surgery. Can you post an update if you get an answer from Exact Sciences?

Update March 18, 2023: I've read all the responses and gained good information from you all on my journey. I know now that my surgeon and oncologist were aware of needing to preserve tissue for the potential need for an Oncotype DX test however, the glitch occurred when they assumed my multiple biopsies (I think 6 in total) taken prior to surgery would be "more than enough tissue" for the Oncotype DX test, thus not concerned about starting the letrozole prior to mastectomy. What the doctors didn't understand is the Onco test needs a minimum of a 2 mm untouched, continuous piece of tissue for each test sample. I have educated them on this. A total of 5 out of 6 of the biopsies throughout my breast were known as positive. Once this was determined and 2 more non-biopsied highly suspicious tumors were identified, there was no reason to perform yet another series of biopsies as I made the recommended decision to have a double mastectomy. I was started on letrozole 5 weeks prior to surgery but only after all, biopsies were completed. All tumors and cancerous tissues from the mastectomy were, therefore, not viable for an OncoDx test.
So, here I am 10 months from diagnosis and 7.5 months post-surgery. After speaking to multiple oncologists around the country, U of Chicago Oncology Professor, and contact with the Oncotype DX engineers/scientist, they unanimously affirmed, I would never be able to have the Oncotype DX testing performed. The great news, without exception from all consulting physicians/scientists, was that most of my known breast cancer findings are very much in my favor.
I have come to terms with my situation and have adopted a seriously positive view of my prognosis. I am starting to feel like myself, energetic, full of life energy for the first time in 5 yrs. I had suffered unexplained, increasingly severe fatigue starting 5 years ago. Interestingly, I was told by all that based on my cancer's slow growth, it also started about 5 years ago! I am changing my lifestyle, exercise, and diet. I am taking charge of the things I can. I now view this problem as a blessing in a scary disguise. I may have dodged a painful bullet with chemo. I am at peace with my lot now as I have exhausted every and any avenue of rectification.
I thank you all for your interest, care, and great information. I wish you all peace and wellness in your journeys through this difficult "bump" in the road.