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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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Randy 36 | @randy36 | Aug 22, 2022
In reply to @anjalima "Have you had the surgery? Many oncologists send the surgical tissue for the ONCOTYPE rather than..." + (show)
@anjalima

Have you had the surgery? Many oncologists send the surgical tissue for the ONCOTYPE rather than biopsy tissue. This is common.

Edit: upon re reading I see you have had the surgery. I’m not a medical professional but my understanding is that ONCOTYPE can only be done on ER-PR + HER2 negative tumors. Please double check and don’t rely on my research . Your Oncologist should be able to review this with you and tell you if Letrizole was somehow involved . If not move on to another oncologist if possible.

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Thank you Anjalima for your interest. Apparently, once you start aromatase inhibitors (Letrozole), your tissue samples will no longer work with the test and give a meaningless value. Since I started on letrozole 5 weeks prior to surgery, the only useful tissue available is that of the biopsies. The doctors didn't take into account this issue prior to starting me on it. I didn't know. I'm not angry or looking to point fingers. I am not willing to give up on this until I find reasonable solutions for my health and peace of mind.

REPLY
anjalima | @anjalima | Aug 22, 2022
In reply to @randy36 "Thank you. I am not with any major cancer clinic due to my insurance which is..." + (show)
@randy36

Thank you. I am not with any major cancer clinic due to my insurance which is the reason I am participating in this site for patient education and support. I have found studies demonstrating promising results by initiating aromatase inhibitors prior to surgery if the time from diagnosis to surgery is extended however there was no mention of preserving options for Onco Type DX testing. Note that I was instructed by my surgeon that the AI's must be held 1 week prior to surgery due toan increase risk of clotting. Onco surgeons and Oncologist may not realize that biopsies generally do not provide adequate tissue, even collectively if more than one for Onco testing. I had four CA+ US-guided and 1+CA stereotactic biopsies at two different facilities (complicating matters more). I'm hoping to catch the attention of someone who may have been in the same bind or a Dr. who can recommend any viable way forward other than facing a future of doubt rather than peace of mind.

Jump to this post

Have you had the surgery? Many oncologists send the surgical tissue for the ONCOTYPE rather than biopsy tissue. This is common.

Edit: upon re reading I see you have had the surgery. I’m not a medical professional but my understanding is that ONCOTYPE can only be done on ER-PR + HER2 negative tumors. Please double check and don’t rely on my research . Your Oncologist should be able to review this with you and tell you if Letrizole was somehow involved . If not move on to another oncologist if possible.

REPLY
1 reply
Randy 36 | @randy36 | Aug 22, 2022

Thank you. I am not with any major cancer clinic due to my insurance which is the reason I am participating in this site for patient education and support. I have found studies demonstrating promising results by initiating aromatase inhibitors prior to surgery if the time from diagnosis to surgery is extended however there was no mention of preserving options for Onco Type DX testing. Note that I was instructed by my surgeon that the AI's must be held 1 week prior to surgery due toan increase risk of clotting. Onco surgeons and Oncologist may not realize that biopsies generally do not provide adequate tissue, even collectively if more than one for Onco testing. I had four CA+ US-guided and 1+CA stereotactic biopsies at two different facilities (complicating matters more). I'm hoping to catch the attention of someone who may have been in the same bind or a Dr. who can recommend any viable way forward other than facing a future of doubt rather than peace of mind.

REPLY
1 reply
anjalima | @anjalima | Aug 22, 2022

If you are not with a “major” breast cancer clinic .. like Mayo, MSK, MD Anderson, John’s Hopkins and the like, perhaps a second option with one of these might be a good next step.

I’m so sorry for your worthy concerns and wish you the best going forward. Hugs

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