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

Posted by Randy 36 @randy36, Aug 21 5:33pm

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.

Interested in more discussions like this? Go to the Breast Cancer group.

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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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.

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@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.

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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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@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.

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So sorry to hear that. There is so much we need to know at such a vulnerable moment.

I hope you can get some help with this. I’ll be thinking of you.

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I've had the OncotypeDX and know a little about it. I don't know why your surgeon didn't automatically save tumor tissue, collected during surgery, as mine did automatically so genetic testing can be done. Unless as you mention the tissue sample would be too small? But the tumor removed from me was 5mm and sufficient for two biopsies and OncotypeDX test. I don't think that being on letrozole would have made the OncotypeDX invalid but could be wrong.

Oncotype has other breast cancer tests that might be helpful so you could call them and ask if there are options still available.

It would seem that you need to find an oncologist who's familiar with all of the genetic testing that might apply, including any that don't require tumor tissue samples. There are several companies testing for different things, including well-known mutations, and some can be identified with blood tests. And new tests being approved frequently. So, if your doctor(s) aren't fully aware of all of them, maybe they can refer you to someone with more knowledge who might be more helpful?

And, just maybe, one of the two facilities that did the biopsies has automatically saved tissue for further testing?

In any case, I'd get a second and maybe third opinion by consulting with at least one other oncologist if this is, as noted, an unusual cancer to deal with. There might be a few different treatment paths to consider and you'll want to be able to choose your best options.

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I’m not sure what my two biopsies were called technically, procedure wise, but my two Oncotypes were based on the biopsies and I had results before surgery.

My experience was a needle biopsy followed by the injection of a clip to identify during mastectomy.

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In my case, the tissue provided to Oncotype was from the actual tumor removed at the time of surgery and post-surgical biopsy. I think that that is the more usual protocol as, until a surgeon sees the actual tumor area, there's less assurance of actually removing the best tissue sample. (Even very precise biopsies aren't as definitive as exposing the area and seeing tumor and its surrounding neighborhood.)
But that's just my speculation.

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My understanding is that doctors order ONCOTYPE on pre surgical biopsy to determine if chemotherapy might be a useful pre surgical treatment to shrink tumors and treat lymph nodes in the hope of reducing the need for radical axillary node removal.

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I would call the Oncotype Dx folks and ask them about the effect of neo-adjuvant letrozole on test results obtained after surgery. The company is Genomic Health and they are very helpful.

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@anjalima

My understanding is that doctors order ONCOTYPE on pre surgical biopsy to determine if chemotherapy might be a useful pre surgical treatment to shrink tumors and treat lymph nodes in the hope of reducing the need for radical axillary node removal.

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That could be as well. I think it would be helpful to have the data as soon as possible. I had surgery within a week of pre-surgery biopsy so there wasn't much delay involved. Getting a low OncotypeDX 'risk of recurrence' was welcome news though and I'm glad that my oncologist suggested the test (and glad insurance covered the cost)!

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I had ONCOTYPE data pre surgery. I was fortunate and did not require chemo.

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