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Topic: Oncotype Test—Insurance is denying

Forum: Diagnosed and Waiting for Test Results —

Share with and support others all waiting for test results from CAT scan, PET scan, Oncotype tests, Mammaprint, FISH, IHC, and other diagnostic tests.

Posted on: Apr 16, 2020 07:49PM - edited Apr 20, 2020 02:48PM by kathabus

kathabus wrote:

This Post was deleted by kathabus.
43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/24/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/15/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/21/2020 Prophylactic ovary removal Hormonal Therapy 8/21/2020 Femara (letrozole)
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Apr 16, 2020 08:58PM OnTarget wrote:

The oncotype company said it is always denied and had me fill out the forms to dispute it from day 1. I never heard back, so I'm assuming it got paid.

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Apr 18, 2020 01:01PM jojo9999 wrote:

how large was the positive node? I think the test is always covered if the node is a micro mets (less than or equal to 2mm). But it is often used with more nodal involvement.See this abstract.

"In conclusion, our findings support using endocrine therapy alone in ER+ HER2-negative breast cancer patients with micrometastases/1–3 positive nodes and Recurrence Score < 18."

the study is here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5591314/

Dx 8/2014, ILC, Right, 1cm, Stage IIA, Grade 1, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 9/7/2014 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Radiation Therapy 11/10/2014 Hormonal Therapy 12/22/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 18, 2020 02:13PM kathabus wrote:

That’s the problem. It was 8mm. I got the results even though it was denied. They will deal with the insurance company directly. Great folks. Thank you!

43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/24/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/15/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/21/2020 Prophylactic ovary removal Hormonal Therapy 8/21/2020 Femara (letrozole)
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Apr 18, 2020 06:50PM edwards750 wrote:

They told me the same thing On Target although mine was approved by BC and then denied. Go figure. I had a micromet and a small tumor. Thank God for the test because I was able to dodge chemo with a low score of 11. 8% chance of a recurrence.

Diane

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Apr 18, 2020 07:02PM kathabus wrote:

Diane—they covered it after you avoided chemo, right???? I mean, it saves them so much money they should be happy to!!

43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/24/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/15/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/21/2020 Prophylactic ovary removal Hormonal Therapy 8/21/2020 Femara (letrozole)
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Apr 19, 2020 10:59AM beach2beach wrote:

I had no nodal involvement and a 9mm tumor. My BS sent it to have the test performed. I got my results, never heard a thing from the ins. company.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 24, 2020 07:09AM - edited May 24, 2020 07:11AM by rubypenguin

Glad you had a good experience with ONCA - mine not so positive. My tumor was caught early (2 mm), ER + (99% per biopsy); PR+ (60% per biopsy), HER2 negative, Grade 1, 7 of 7 lymph nodes clear (had mastectomy March 31,2020). ONCA score came back 32 - shocking everyone. Oncologist questioned the results as ONCA hormone subtests showed tumor was barely ER + (more than 90 percentage point difference between ONCA and biopsy), PR - (more than a 100% difference from biopsy). HER2 score was negative (on both biopsy and ONCA), not the same but not a large discrepancy - like the ER, PR. The hospital pathology retested the core biopsy and tumor (the latter had been sent to ONCA) and confirmed the original diagnosis on both and confirmed that the core biopsy results matched the tumor results. ONCA was asked to explain discrepant results or retest and they refused both. A lab assistant reported to oncologist that they have stringent protocols and will not be questioned. Suggestions? I feel that the ONCA score is incorrect - given the characteristics of my tumor and my age (nearly 71), but would like the valdiation.

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May 24, 2020 08:35AM - edited May 24, 2020 08:49AM by Beesie

rubypenguin,

How in the world did Oncotype even do the test if your tumor was only 2mm in size? The NCCN treatment guidelines question the validity of the Oncotype score for any tumor that is smaller than 5mm in size.

That said, what you should do is ask your Oncologist to run the Oncotype RSPC (Recurrence Score Pathology Clinical) model. This is an computer program that your MO should have access to from the Oncotype people, and it takes literally two minutes to do it. Your MO will input your score (32), your age (71), the tumor size (2mm), the tumor grade (1), and whether you will be taking Tamoxifen or an AI (the Oncotype model always assumes that you will be taking endocrine therapy of some sort). The model will kick out a new 10 year metastatic recurrence risk. So instead of the generic risk figure that you will have received based on your 32 score, your score will still be considered but the recurrence risk will be more specific to your situation.

Given that you have 3 favorable characteristics, i.e. 3 characteristics where your situation is more favorable that the average that is built into the Oncotype model (older age, smaller tumor, lower grade), I can guarantee you that your recurrence risk will drop significantly. And this is Genomic Health (the Oncotype people) providing this information.

Lastly, as for the ER and PR, there have been quite a few people on this site who have encountered significant differences in their ER and PR percentages with the Oncotype score vs. their pathology. Oncotype and pathology use different methodologies to measure so small differences are not unusual but huge differences, as in your case, make no sense. Mostly this can't be explained, but in your case it may be caused of the tiny sample size.

Anyway, get your MO to run the Oncotype RSPC model. What it will tell you is that even if your Oncotype score is accurate, your metastatic recurrence risk is low and likely does not warrant chemo (whereas normally a 32 score would come with a chemo recommendation).

Edited to add:

Ruby, here is a copy of the latest NCCN guidelines for ER+/HER2 node negative cancers. I have highlighted in red, and added comments in red, where there are points that are relevant to your situation.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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May 24, 2020 08:49AM kathabus wrote:

I was going to ask about the size, too. But besides that....and assuming they had an appropriate sample....

If I were you, I would try to call the Oncotype folks directly. If your MO had one of her nurses look into it, someone...told someone....told someone....who told you. And sometimes you just have to hear it directly. I would call them. I would focus on the ER part. Why would that be wildly different? That's a very fair question. And if a lab assistant is not willing to go into it, I would keep asking for someone else until you get an answer.

Sometimes we get surprised which is why we do the test. But the big difference in ER?? That needs to be addressed by someone who cares over there. Again, I don't think that's an unreasonable question for them to answer.

43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/24/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/15/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/21/2020 Prophylactic ovary removal Hormonal Therapy 8/21/2020 Femara (letrozole)
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May 24, 2020 09:16AM rubypenguin wrote:

This is extremely helpful! I know that in at least 5% of cases, there are discrepancies between the pathology results for hormone and ONCA, but my oncologist said in his nearly 35 years of practice, he has never seen such discrepant results. I will call his office on Tuesday and relay this information. As an aside, I was annoyed that ONCA would not even discuss the possibility of doing a retest - they refused, even if I paid for a second test.

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May 24, 2020 09:19AM rubypenguin wrote:

Thanks. I'll call on Tuesday and ask the question. My oncologist's med tech called, but my oncologist followed up. But I want to call too.

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May 24, 2020 11:02AM Beesie wrote:

rubypenguin and kathabus, my understanding is that while Genomic Health are very helpful with some concerns, they are never responsive to questions about differences in their ER and PR percentages vs. the IHC testing done by pathology labs. Ruby, in your case, they might say something about the size of the sample, but I believe it is their practice to stand by their results and not redo the test because of these types of inconsistencies. I could be wrong - and maybe someone will come by here who has been successful in dealing with them about this - but I've read quite a few posts about these types of discrepancies on this site (a number of people have had Oncotype results that are PR- when their IHC was PR+; this is a frequent topic of discussion here: Topic: Single Hormone Receptor Positive -> ER+/PR-/HER2-) and any work done to try to reconcile the two results has always been done on the pathology lab side, never the Oncotype side. It's worth a try, but you should go in with the expectation that you might not get anywhere with them on this.

rubypenguin, let us know how both your discussion with your MO and with Genomic Health go.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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May 24, 2020 11:40AM rubypenguin wrote:

That's disappointing - especially since so many oncologists rely on their results and the stakes are quite high. I was really put off when my oncologist told me that (1) he had placed several calls to both the CEO of Genomics Labs and the head pathologist, and he was given contact information (via voicemail) to one of the lab assistants - his emails explained the discrepant findings and the re-testing by the hospital labs he had ordered when the ONCA typing report had come in and (2) she (lab assistant) had been very dismissive and explained under NO circumstances would they consider re-testing. He also raised another issue that has been troubling me. My cancer was found by accident - my right breast had calcifications and I have gone back every other year for a diagnostic mammogram and sonogram after my 3-D screening. The radiologist ordered a biopsy of an area of calcifications he said he could not definitively ID as benign, and when I was under the magnification for biopsy, the small suspicious area was seen and biopsied. Since it hadn't shown up on any imaging, including contrast dye MRI, and since the breast contained other areas of calcifications, which were now "suspected" of possibly hiding cancer, I had a mastectomy. The tumor was sent to ONCA two days after surgery, but wasn't "logged" into their system until weeks later - they claimed they hadn't received it until the pathology produced the receipt showing the delivery. When that was brought to their attention in several weeks ago, they refused to discuss that either - with my surgeon, oncologist or pathologist. Not liking this lack of transparency.

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May 24, 2020 01:35PM - edited May 24, 2020 01:35PM by BCat40

Hi Ruby, I had a similar issue with Oncotype last month, although the numbers were not as far off as yours. My biopsy results showed 95% ER+ and PR+, then my oncotype test came back at 20 with barely positive for ER and PR. My hospital pathology lab redid the tests and then downgraded my ER to 50% + and PR to 70% +. These were lower but still somewhat off from the Oncotype. My doc said this was due to "tumor heterogeneity." It still makes me question the accuracy of the test. My tumor was 8mm.

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole-breast: Breast

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