Should we have the OncotypeDX test done?

pupmom

My onc has recommended it, but the cost will be over $800.00, after insurance. My guess is that we should pay for it, but I am curious if anybody knows how effective this test is in targeting the most effective treatment. Thanks!

PLJ

I pushed to have this test done, even though it is rarely offered in Canada. Nobody wanted to prescribe chemo for me, based on my stats. My low Oncotype score reinforced that, but for some women, their seemingly indolent tumours score high on Oncotype. Without the test, some may have bypassed chemo to their detriment. Oncotype helps to determine who will benefit from chemo and who will not but is an additional tool, not the one and only!

pupmom

Thanks PLJ! I got a call out of nowhere today from the lab involved with this test and didn't know what to think. What I'm wondering is if I should wait until after surgery to authorize the test. I understand the test is related to whether one is node negative, which we think, but do not know until surgery, I am.

coraleliz

If you have strong inclinations to do chemo or not already, maybe not. I was willing to pay the full cost if my insurance denied it. Insurance did pay. The test doesn't guarantee you need chemo to prevent a reoccurence or you won't get a reoccurence if you skip chemo. You might look at the reoccurence rates(Genomic Health website) for low, intermediate & high scores. If you'd have chemo for a low score(some women do) or if you'd decline chemo even if your score was high(some women do), there is probable no reason to shell out the $$$. And intermediate scores are just frustrating, from what I've read here on the boards. I found the extra information useful in my decision.  

pj12

Mostly the oncotype DX confirms what your doctors recommend anyway. In my case my oncologists said no chemo but I was nervous to skip any step that might give me a better long term outcome. I heard them but was not convinced. When my oncotype came back my recurrence risk was intermediate (28) which gave me about an 18% recurrence risk, but the report explained that my tumor had a low mitosis rate which makes chemotherapy pretty feeble against it. As my doctor explained, the possible side effects outweighed the less possible benefits of chemo. So the oncotype supported my doctors' opinions and made me feel better about my treatment plan.



It's great if you score in the low category (no chemo!) and validating if you fall in the high category (you know you need to do all you can). If you fall in the middle it's not as clear cut and you and your doctors will have to discuss the pros and cons.



Two and a half years ago when I had my surgery the company had a very generous policy regarding accepting one's insurance payment as payment in full for the test. I don't know if it is still that way or not. But they are very responsive to patient communication and you can contact them directly by phone or Internet. The company is Genomic Health and they have a very good website.



Best wishes in the next few weeks to months. This is such a difficult time with so many unknowns. You have found a great resource here on BC.org.

bevin

HI there, I'd get the test done. Its another piece of information to help make the decision on chemo's benefit.

Please also the genomic health people. They own the Onxo type test and they have a financial aid type program and they help pay for the balance after Insurance has paid.  I went through their grant/financial aid program and my income is really pretty generous and I still qualified.  All in, I ended up paying 45$ or so for the test. All you need to do is answer a few questions over the phone, they then send you a form to fill out. You don't need to give them your tax reports or anything to prove our income and debts. Truly call them, its well worth your time to discuss your options.

Good luck and please send me a PM if you want to chat about the financial /aid/grant program they offer more in depth. I wish you strength as you go through these next months.

Bevin

mdg

The company that does the test has a patient assistance program. They told me about it when they called me but I did not need assistance as my insurance covered it. Did you check with your insurance to see for what situations they do cover it?

etherize

For what it's worth, my MO (who is very smart and worked at Memorial Sloan Kettering Cancer Center) said Oncotype is not as powerful a predictor as it's made out to be.  

He said Mammaprint is much better.  You have to order it before your surgery, so they can prepare the specimen correctly.  There's more info on it here: 

http://www.breastcancer.org/symptoms/testing/types/mammaprint.jsp

I don't know if your insurance would cover it, but it's worth asking about.  Good luck!

Oh, and Oncotype CAN be done if you have one positive node (it was offered to me) ... they're currently doing a study on node-positive women (I think postmenopausal) and Oncotype. 

SpecialK

My BS ordered the Mammaprint testing done but failed to get a referral from my insurance company.  The test ($5,000) was done before finding out that my insurance company considers it "experimental" even though it is FDA approved, and refused to pay for it.  I had not signed any documents that said I would pay if insurance did not.  I contacted my BS since he ordered it - his office contacted Agendia and asked the cost to be written off.  Make sure your insurance will cover this test in advance! 

pupmom

Mdg, when they called today they said our insurance, who they had already contacted, would pay for all but $800.00 of the $4,000.00, unless we were under a certain income. We are not under that income level so we will be paying for it. It's a lot of money but this is my life. Fortunately we can afford the test. I worry so much about the uninsured and underinsured women who face this horror.

bcincolorado

I did have to pay some out of pocket as well, but feel it was worth it since the score is what saved me from chemo.

pupmom

Etherize, I looked at your link. Seems like a great test, but I am too old for it, according to the criteria listed. I just turned 63. Women need to be 61 or younger, unless they will give folks some wiggle room.

pupmom

Hi Special K, I think I am too old for Mammaprint, but I will definitely double check with my insurance (lab said they checked but who knows what was said) before ok'ing the onco test.

pupmom

Bcincolorado, HOORAY you were able to avoid chemo! So hoping that will be me too! 

mdg

I paid about 10% of the test cost.  It was worth it to me but my score came back 17...based on that and the pathology report I still had to make a personal decision on chemo.  My med onc told me theat 2/3 of women end up in a gray area with the test so you can't always hang your hat on the results being a definate answer.  I would do it though as it may be helpful in making a decision.  Good luck!

WaveWhisperer

First, I want to thank all the wise, generous women on this site. Before learning about this site, I never had heard of the Oncotype test, my surgeon never mentioned it, and it was not included in any of the written material given me after my diagnosis. I had my first appointment with the medical oncologist today, and I asked about Oncotype. She seemed pleased that I was a knowledgeable patient and said it was something she definitely recommended in my case, since I already fell into somewhat of a gray area, with micrometastasis in one node, which some doctors consider node-positive and some consider node-negative. She said my PR+ER+HER2- would argue against chemo, but the grade 3 tumor and the micrometastasis might argue for it. She said the Oncotype results would help both of us decide the best treatment, although she did warn, as many of you did also, that the results still could be inconclusive. But I want as much information as possible and will feel better making a decision on further treatment (chemo or no chemo) after hearing from the Oncotype, the CT scan and the bone scan.

Again, this is a marvelous resource!