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

Posted by Randy 36 @randy36, Aug 21, 2022

I find myself in a difficult place with no options. I'm 63, dx'd with R multi-centric Est+/Prog- IDC, negative nodes x 4, 3 weeks post-op bilat. mastectomy. The oncologist says there is not enough tissue from the multiple biopsies to do the Onco DX test. Letrozole treatment started prior to surgery due to long waiting time. I'm now told the Prog- feature of my cancer may indicate a more aggressive type of cancer that can only be evaluated by an onco dx test. I'm told that I'm out of luck on that one…. no extra monitoring will be done, just report any "headaches, stomach problems and/or respiratory problems. This means metastasis to the brain, liver and or lung. Why not an annual PET scan? CEA tests? Something??? Maybe contacting the company that makes the Onco test can help? I feel I've fallen through the safety net here. Any information or help would be appreciated.

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@daisy1282022

I am very glad that you taking charge of the things you can! In terms of changing lifestyle, exercise and diet, would you please share more details on them? How and what do you do? I really want to improve myself to a healthier life style too. Best wishes!

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Thank you, Daisy. Now that my energy is returning, 22 lbs heavier and very out of shape after 10 months of diagnostics, emotional trauma, severe fatigue, treatments, and 2 major surgeries. I will be getting back to my healthy eating of organic fresh fruits, veggies, less meat well-sourced, and healthy fats (organic expeller first pressed olive oil). This requires lots of energy to keep this up, shopping, meal planning, and cooking, none from diagnosis to recovery this past year. I started my morning walks again and hope to build up speed and distance. I plan on returning to a gym to do yoga, pilates, and some general weight training for strengthening. I've lost 3 lbs, 20 to go. More importantly, I need to stay active.
I hope this answers your question. Best wishes to you.

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I understand they keep the tumours in the lab
I asked for the Onco testing well after
My surgery & Waiting results I had bilateral lumpectomy all my surgeons agreed and directed me against mastectomy
No lymph involvement
For 5 chemos Lectrazole & Zomec after hereditary testing & bone density

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@randy36

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.

Jump to this post

I am very glad that you taking charge of the things you can! In terms of changing lifestyle, exercise and diet, would you please share more details on them? How and what do you do? I really want to improve myself to a healthier life style too. Best wishes!

REPLY

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.

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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?

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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 🙏💗🙏

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@nahhey

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

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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.

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@callalloo

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%

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

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@nahhey

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.

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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%

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@callalloo

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.

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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.

REPLY
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