Doc won't order Oncotype

My surgeon also did not order the Oncotype on my pathology because of its small size. When I had my first appointment with my MO, she said I had just been discussed at tumor board the day prior and they didn't recommend chemo and the Oncotype isn't ordered when the tumor is as small as mine was. I traveled out of town to be treated by my surgeon who is very experienced and leads the breast cancer unit at a very reputable facility, so I do trust his competence. Still, it is a bit of a relief to know others also were told the Oncotype wasn't ordered because of the size of the tumor.

my tumor size was iffy but grade 3 allowed for oncotype Also if it’s in a node it’s supposed to be allowed If there’s another hospital near you, I’d call oncology and ask them if they do oncotype on that size and grade that you have ... I really can’t think some hospital would like to run that expensive test with her insurance, they are a business! I’ve been going to two different hospitals cause of insurance etc, it’s not a big deal too.

My tumor was 2.0 cm and was first categorized as grade 2. There was no lymph node involvement. My insurance first denied covering the oncotype because my specific condition did not warrant the oncotype since I would definitely not need chemo.

Cost was over $4K

My report came back w/ score of 29 and then insurance agreed to cover it.

A note on Genomic Health and insurance. As soon as the oncotype was ordered, I received a letter and a form from Genomic health, specific to my health insurance company. They wanted me to give them permission (in advance of any rejection) to appeal a rejection directly with my insurance company. Alrighty I said and sent it along to them just in case payment was rejected by insurance company. It was not. Next thing I know I have a bill from Genomic for my deductible portion, which wasn't much considering this test costs the earth. (But is soooo worth it).

So just know that Genomic is prepared to appeal for you/with you with your insurance company.

Mine, too, was done with a sample from the core biopsy - considerably less than .5cm!

Togethertolearn - the hospital is not on the hook for the cost of the test, nor does it profit from it. The test is run by an outside company. (Theoretically, there could be some incentives for MOs to submit samples but that is purely conjecture on my part.)

Here's the thing. All Oncotype scores are not equal. A high score on a small tumor does not present the same risk as a high score on a large tumor. Even with the same score, a grade 1 tumor presents a lower risk than a grade 3 tumor. A score for a younger patient presents a higher risk than the same score for an older patient. Genomic Health, the Oncotype people, recognize this, although they don't talk about it much and they give patients generic reports that don't incorporate these factors. What they do have however is a model called the Oncotype RSPC (recurrence score pathology clinical) that is available on-line to MOs. The MO inputs the Oncotype score, the patient's age, the tumor size and the tumor grade, and the model kicks out a new 10-year metastatic recurrence risk, which might be very different than the risk shown on the Oncotype report that the patient received.

What this means is that with a small tumor and a favorable pathology, and a patient at least over 50, an MO will already know that even a high Oncotype score will not present a high enough risk to recommend chemo, and which means there is no reason to order the Oncotype test.

For example, with a node negative ER+/PR+ tumor, a 35 Oncotype score would be high - and for most patients would lead to a clear chemo recommendation. On average (and on the Oncotype report that you'd receive), you'd have something like a 20% risk of mets with hormone therapy alone. But if that 35 score was input into the Oncotype RSPC model, along with your age (55), your tumor size (5mm), your grade (2) and whether you will be taking an AI or Tamoxifen (let's say an AI), the model would recalculate your risk. With the AI alone and no chemo, 10-year metastatic risk might come out to be only 7% or 8%. At that risk level, most MOs would not recommend chemo.

So size counts. And the Oncotype score is only one factor in the MO's assessment as to whether chemo should be recommended. That's why many MOs won't send for an Oncotype score for those who have small tumors and favorable pathologies. What they are in effect saying is that regardless of the Oncotype score, they would not recommend chemo for a tumor/pathology that small and favorable.

Rather than ask for the Oncotype test, maybe see if your MO can play around with the Oncotype RSPC model, inputting various Oncotype scores along with your age and tumor data. See what your risk would be with each score and whether any score would lead you to want to do chemo. I suspect you'd need a scorepossibly as high as 50 before you'd get to a risk level that would warrant chemo. And with your tumor, a 50 score would be extremely unlikely.

Edited to add: Here are the NCCN Guidelines, which do not recommend the Oncotype test for hormone positive tumors that are 5mm in size or smaller:

Thanks for the great info, Beesie.

happyperidot, has your tumor been tested to be Luminal B? Low or negative PR does not in and of itself mean that the tumor is Luminal B.

https://wjso.biomedcentral.com/articles/10.1186/s12957-017-1299-9

April, it appears from reading this board that very few Oncologists use the Oncotype RSPC. Only a few women here have ever mentioned it, but those who have without exception have been pleased that this extra level of specificity was provided and many have said that the information helped them make their chemo decision, which in some cases was a different decision than they would have made using the generic information provided on their Oncotype reports. I don't know why all MOs don't use the Oncotype RSPC

April, it's a computerized model. The MO has to input 5 datapoints - the Oncotype score, the patient's age, the grade of the cancer, the size of the tumor and either "AI" or "Tamoxifen" to indicate which the patient will be taking. It's take 1 minute.

Hi Maryland,

Here is what I experienced with the Oncotype DX test.... requested this test to see if recommended chemo. I asked the nurse navigator what is the number on the result that they recommend chemo.. her response was 25 and up. I prayed for a result of 10... I was blessed with a 12!

That was in 2012. So no chemo for me. August 2018 I was in shock to be diagnosis with Metastatic Breast Cancer. I'm not sure if the test is helpful.....

PictureLover, even with chemo, you unfortunately might still have been diagnosed with mets.

Based on the research studies and data used in 2012 (different than today, now that the TAILORx study is available) an Oncotype score of 12 likely conferred a risk of mets of approximately 8%. If you'd had chemo, your risk probably would have come down by only 1% or 2% - not much difference in risk. It's for exactly this reason - because the risk reduction benefit from chemo is so small - that chemo is not recommended with lower Oncotype scores. Low scores don't mean that the patient might not develop mets but they mean that chemo doesn't provide enough risk reduction to warrant the side effects and serious health risks from the chemo itself.

With a low Oncotype score, your risk to develop mets certainly was low, but you unfortunately had crappy luck and fell into that low number. I'm so sorry.

exbrnxgrl, one thing I learned in stats is that just because something has a zero probability of happening, it doesn't mean it can't happen.

My oncologist wouldn't give me the oncotype DX because he said the treatment would be the same.....anti-hormonals. You just never know.