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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@windyshores

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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Thank you so much! I have contacted them already and hope I can push my way to someone who will take an interest in this situation. If nothing else, this is an important issue that needs to be addressed if early aromatase Inhib. therapy becomes more common practice. with extended surgical waits. Studies supporting this practice are looking quite promising. Surgical Onc's and Oncologists need to communicate better during this early period. Again, I am not pointing fingers nor am I looking to blame. I want this resolved for my future health and peace of mind.

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@callalloo

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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Thank you so much for your reply and great suggestions. To clarify, I was told that taking the letrozole prior to biopsies would invalidate much of histological and genetic testing. Onco type testing was never brought up until after surgery. I was then told it wouldn't be accurate or have much meaning since the surgical pathology tissue was exposed to letrozole. All biopsy tissues and surgical tissues are saved for 10 years by the receiving labs. I am trying to find out if all the different types of testing an Oncotype DX does and see if any of them may be valid with the available tissue. My multiple biopsies with 2 different labs are "not enough tissue" for this test so I am told. My plan now: Awaiting ONCOTYPE DX company to contact me, 2nd opinion from another oncologist, I will contact both labs that hold my biopsy tissues, determine how much each have and if combining them may be enough for part or all of the ONCOTYPE DX testing. Again, I appreciate your interest and time put into this.

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

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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 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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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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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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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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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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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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