Oncotype Dx test...

Harley44 · July 2007

Hi everyone,

On Friday, I called my new onc and left a message, that I want him to order the Oncotype test. I got a message today that he has finished the paperwork to order the test. How long will it take to get the results? The onc told me that it will only take a week, but I heard from my first onc that it will take 2 weeks. Which is it? I'm praying for a low number.

Thanks!
HARLEY

Anonymous · July 2007

Harley,
I pray that you have a low number as well....mine was 12 so I opted out of chemo...

My test was done during the holiday season so took about 5 weeks....but I think I was originally told by the lady that called me from Geonomic (the company that does the test) that it would take approximately 4 wks for results...

I dont think I have ever heard of anyone getting them back in a week....I hope that your doc is right and it will only be two weeks....all that waiting is torture..

Best wishes for you
Jule

scarednancy · July 2007

Hi,
It took exactly 2 weeks to get my test results back. I hope you get a really low number. Mine was 9. I didn't do chemo. I feel great!
Nancy

Harley44 · July 2007

Hi Jule,

Thanks for the reply. I think it will be more like 2 weeks, also. But, my doc seemed to think it would be earlier.
I called my insurance rep., and she seems to think I may have made a mistake ordering the test, since I didn't get an authorization from the insurance company first. I'll pray that it goes through, and the manufacturer just writes off the cost, as the rep who called me said they do.

Thanks!

Still praying for a LOW number!
HARLEY

Harley44 · July 2007

Hi Nancy,

Thanks for your reply. I think it will probably be more like 2 weeks, also. But it would be nice if it came in earlier. I have been so conflicted about my chemo decision! This dr. is very nice, so I hope I can keep seeing him. He's out of network, so... it may end up costing alot!

Still praying for a LOW number,
HARLEY

sazzyz0044 · July 2007

Harley,

My mom's test was back in 7 working days. They received it Wenesday June 27th, and we had our news delivered on July 6th (score of 12). However, we let our onco nurse know we wanted them to begin assessment asap, and we'd bill insurance later. We are "almost" positive they will pay - but we were too anxious for results to wait on the answer.

So, I think it can be done really fast - it's the insurance approvals that slow it down.

best wishes to you,
sue

Harley44 · July 2007

Hi Sue,

I just called my new onc Friday and left a message that they should go ahead and order the Oncotype test... but, I didn't get an approval from my insurance, because they already told me that they won't cover it... bad news! I wasn't going to get the test done, because it's so expensive, but when I saw this new onc. for just a second opinion, not only did he tell me that he will try to keep seeing me for my treatment, he said that he'd call the rep to see if they would pay for the test for me. The rep from the company called me and told me that we qualify for special assistance, and if I go ahead and get the test, they will fight with my insurance company and appeal, if necessary. She also told me that whatever my insurance company doesn't pay, the company will write off. I sure hope this is true, or else we will be left with a $$$$ bill! My dh said not to worry, but I can't help it...

So, maybe I'll have the results by next Monday. I sort of hope they will have them by Friday, since I'm seeing my surgeon then. He's been bugging me to get chemo, and he'll have to put a port in. Sometimes I wonder if the pressure to get chemo is coming from an alterior motive - I mean, he'll be getting TWO more surgeries!

I really trust him though, but I'm only partly kidding!

Thanks for your reply. I sure hope I won't have trouble with getting the company to keep their promise! The rep is supposed to send me some information, so I guess I'll just wait til I get the package in the mail, and then maybe I'll have a contact to call if I have any questions.

Take care,
HARLEY

sazzyz0044 · July 2007

Harley,

From what I've found online, they (Genomic) are conducting research right now and are covering the costs for many people. The study is a debate on taking chemo if you score over an 11 (which is considered a low score). It's basically going to track results of woman who scored above an 11 and still opted for chemo. Of course, this does not mean they force you into chemo...they are just willing to cover the cost of more tests to see if thay can have more woman participate in the study.

In regards to your surgeon - don't worry. I've found you really only need to listen to your oncologist. My mom's surgeon was pushing to put a port in also since he'll be doing a re-excision for more clear margins (it was too close for comfort). In the end, my mom scored a 12 and opted out of chemo.

Hoping this works out well for you - I have a feeling it will. My mom's onco nurse said more and more insurance companies are covering this everyday...she said she rarely sees denials anymore.

Sue

Harley44 · July 2007

Hi Sue,

I sure hope you are right! I know about the study, because my first onc wanted me to do the trial, but I said NO, because
1. my insurance doesn't pay for studies, and in the paperwork from the trial, it states that Genomic will pay for the Oncotype test, but my insurance company would have to pay for all the other tests and the treatment, etc... for the trial, and they won't pay, if it is a trial.
2. my surgeon told me not to do the trial, b/c he said that he knows how I am, (nervous & scared about bc) so I sort of agree with him about that.

So, since I'm not doing the trial, I wonder if Genomic will REALLY want to pay for my Oncotype test. I guess we'll see...

Thanks for the info. I spoke to my insurance case worker, and she promised to talk again to the director of the case management program, to see if he will re-consider... She also needs to find out how to get me approved to see this new onc. I think I may have to pay part of the bills, since he's out of network, but I will just pray that it all works out... God has been really good so far, HE has been providing everything I need, sometimes even before I know I need it!

Take care, and good luck to your Mom!
HARLEY

scarednancy · July 2007

Hi Harley,
I didn't pay anything for my OncotypDX test. They billed my insurance and they paid for half and the company wrote the rest of it off without even bothering me. The people who work at the Oncotype lab are wonderful. Please don't worry about the bill. It will take care of itself. Good luck and keep all your energy for positive thoughts.
Nancy

Anonymous · July 2007

Harely,
I will keep you in my thoughts and I hope to see you keep posting. This is a wonderful resource and the ladies/men here are always so helpful...

I think my testing took so long because of the holidays and such, but it was worth the wait as I was very undecided about doing the chemo too.

Will keep you in my thoughts and prayers for a low score....please let us know how things are good...

And yes, I do remember the lady at the manufacter also telling me not to worry that they would do appeals and such if my insurance didnt pay but thankfully they paid the entire thing without question....

Besh wishes
Jule

Harley44 · July 2007

Hi Nancy,

Thanks for the advice. You are right. I can't waste all my energy, worrying about this insurance/finance stuff. I have decided to go ahead and do the Oncotype test, and I want to continue seeing this new onc, so even if my insurance won't cover all of it, I still need to see him, because he is a very good dr., and God will take care of all the rest.

Keep the faith,
HARLEY

Harley44 · July 2007

Hi Jule,

Thanks for all the great advice! This message board is a life saver for me! I feel so much better, too, since seeing that new onc, so I think that I will continue seeing him, and I'm pretty sure that my insurance case worker will do everything in her power to get it approved.

Thanks!

Take care,
HARLEY

Lynne · July 2007

Harley

I had the test done 2 years ago. They submitted it to my insurance, and the insurance paid for all but the out of network deductible and the 20% co-insurance. The remainder came to $1200. I got a notice from the company saying what the insurance had paid and what the remainder was, but said they were appealing the remainder. That was over a year ago, and I haven't heard from the company since. I assume they are still appealing it or have just taken care of it. If I do get a bill, they said I could appeal it 2 more times (they appeal it twice also).

This test was great in helping me decide on chemo. My score came back 12, which meant that I have a 8% chance of recurrence in 10 yrs. Chemo would have only brought it down to 5%. 92% chance of it not coming back was good enough for me. I had radiation and decided on a complete hysterectomy (uterus, ovaries, cervix, all of it) and am now on Femara (was on Arimidex for a year, might switch back).

Good luck!

Lynne

pdb · July 2007

I had the test done nearly 2 years ago as well,in September of 2005. Took 1 week to get results.

My insurance, a local HMO, has consistently refused to cover the cost of the test....and in those 2 years I have never received a bill or request for payment from Genomic. They have continued to do battle with my insurance company on my behalf.

Harley44 · July 2007

Thanks, Lynne,

The rep from Genomic told me that they will bill my insurance company, and they will appeal, but if they don't pay, Genomic will write off the whole thing! I am sceptical, though. But, we will see!

The chemo decision is a tough one for me. Since I read that for this type of bc (ER+/PR+) and node negative, chemo doesn't really help all that much. SO I think why put myself through all that if it won't really help that much? I met with my surgeon on Friday, and he was upset that I hadn't made a decision yet. He wants me to do chemo in the worst way! He told me horror stories about some of his other patients who had recurrences. Whenever I ask him a question about other people, he always tells me that I can't compare myself with other women, but when it's convenient for him, he compares me with other patients of his!

I really like him, though. Before the appt. was over, I was ready to say, "go ahead and put in the port!"

I also wonder why different drs. recommend different treatments for the same type of bc? My ex-boss told me that he neighbor's friend had bc and it must have been the same type I had, and her dr. told her that she should just take Tamoxifen... He said that it was to be used INSTEAD of chemo! Now why do they do that?

Thanks,
HARLEY

Harley44 · July 2007

Hi PDB,

Thanks for the information! I am not worried anymore. At first, I was worried, thinking that I would end up with huge medical bills!

I have another onc appt., on 7/24, so I'm pretty sure the test results will be in by then. I called today, and the nurse told me that they don't have the results yet, but they should be in soon, definitely by 7/24! She was really nice, too! I told her that I was worried about having to pay for my onc, because they told me that they don't take my insurance. But she told me not to worry, since my dr. said that he would keep seeing me.

Thanks!
HARLEY

stl · July 2007

Has anyone with node-positive cancer used an oncotype test? Please leave a post on this board if so. Thanks

Anonymous · July 2007

Hi stl - I really don't think you'll find anyone using the oncotype test for node postive ... since the test was designed for node negative.

With positive node(s), most will recommend chemo.

Hugs,
Doreen

Elizabeth06 · July 2007

Recently Genomic Health, Inc. (Oncotype DX) published new findings regarding the recurrence score in determining the need for chemo in node negative OR node positive ER+ breast cancer. I found the below link interesting since it appears that the Oncotype DX test results apply for node positive as well as node negative patients where chemotherapy is concerned.

http://investor.genomichealth.com/ReleaseDetail.cfm?ReleaseID=246852

Anonymous · July 2007

Elizabeth - thanks for posting that link ... it's really interesting ... and something I was not aware of. Thanks!
Doreen

katz08 · August 2007

I have bc Stage 1 with .8cm invasion, no nodes. My oncoligist is wanting me to take an onco test, but I'm not sure I want to try chemo. My husband works on the road and I wouldn't have him home with me during chemo. I have two small children 12 and 10 to care for. I'm a little confused about the onco testing. I was told chemo could reduce recurrance down 4%. Then I've read it could be as much as 15%. Is this because of being at a higher risk rate by the onco test? My recurrance rate is already at 13% with rad and hormones. I'm not sure this is worth the side effect of chemo.
Terrified

Anonymous · August 2007

Hi Katz08- I'm really sorry you've had to join our club - but happy you found this site - as there's a ton of information and support here.

The oncotype test looks at the genes in the tissued removed and analyzes them - the output is a chart and a recurrance score. The recurrance score is used to assess your individual risk of recurrance - and possible benefit from chemo. The recurrance scores are low, intermediate and high risk of recurrance. For scores in the low group its' felt that there is no benefit from chemo - to treat this group with chemo would be overtreatment. For scores in the high group its' felt that there is benefit from chemo - to no treat with chemo would be undertreatment - for the intermediate group - the decision to have chemo or not is a very personal decision ... as the choice is not obvious. There's a clinical trial underway called TailorX which is focused on the oncotype test and scores in the middle group (they actually broaded the scores they are looking at though by including the top scores from the low risk aqnd the bottom scores from the high risk groups).

Let me know if you want to know more - I can link in information about oncotype and the TailorX trial.

I was hoping my score would be in the low risk area - in fact it was at the low end of the intermediate risk area - so I was in the "grey area" and needed to decide whether to do chemo or not.

Doreen

Dkissel · August 2007

I had the Oncotype Test and had one positive node. It certainly made my decisions for treatment easier.

katz08 · August 2007

I'm so glad you responded. I'm feeling so alone out here. I have to make all these decisions by myself. I was told even with chemo it only improves recurrance 4%, seems low for all the side effects. Do you think percentage would change if I was on the high end of recurrance. Not sure if I want to know the answer to the onco test. I don't know if my mind or body is up to chemo.

Jaredsmom · August 2007

Hi katz08~ I went to Dana Farber Cancer Institute and underwent oncotyping. My score was 9...So, no chemo for me. The MD told me that at age 43, the side effects of chemo as well as the potential longterm effects far outweighed the benefit I would receive. However, 3 other MD's encouraged me to undergo chemo. I was stage 1C, Er/Pr positive~ Did 6 weeks of radiation and now on Tamoxifen...You will do what is right for you!!

Anonymous · August 2007

Hi Katz08: Has the oncotype test been requested ?? I Know how hard this is - but you really aren't alone ... there are many us here who have been in a very similar situation to you. we know how hard the decision is ... and how you struggle with it. I do not know if the 4% benefit remains - at the various oncotype scores - I would imagine that it does not ... since if your score is in the low risk - its' felt that you really would not get any benefit from chemo - and if the score is in the high risk group - that you would get benefit from chemo.

I'd say you need to talk to your oncologist about the specifics once you know what your oncotype score is ... then its' a specific situation - vs. a hypethetical situation.

Y-me also has a hotline where you can call and talk to someone on the hotline - the peer counselors are all trained breast cancer survivors - you can even asked to be matched to someone similar to your situation. The hotline number is 800-221-2141 in case you're interested in talking to someone on the phone.

Things will get easier once you have a treatment plan in place ... people told me that and I didn't believe it - but it really is true!
Hugs,
Doreen

stl · August 2007

Hi Dkissell, Did you find that most docs were unsupportive of using the oncotype test? Did you seek a special opinion about this? What was your decision about chemo? Thanks, Stl

lisettemac · August 2007

Hi Katz: In addition to the Oncotype, you might ask your Onc if he consulted Adjuvant Online. It's an online system where he can input the characteristics of your cancer and get information about the benefits of different therapies (chemo, radiation, tamoxifen, etc). My dr did it and shared the data with us. I had a high oncotype score, so chemo was indicated, but just seeing how much of a difference each therapy would make was helpful in making a decision, too. While each one only knocked off a small percentage of recurrence, it was important to us to get my recurrence rate down to the single digits. DH is a big "numbers guy" so it really helped him to see the data. You might ask about this. Best wishes to you in deciding what treatment to get.

SKHUNT · September 2007

Hi, my OncoDx score is 11. I am node negative, ER positve and they are pushing me to do chemo. I am 63 and in good health except for the BC. I am very confused at this point. I have a appt with new onco for 2nd opinon. Did you decide to go for the chemo or not?

emg326 · September 2007

My score was 16, Stage 1, node negative, er/pr positive, her-, and I chose to do chemo. My onc. didn't really give me any guidance; it was up to me. I went for a second opinion, and he felt I should do it because it was grade 3 and almost 2cm. I go for my second tx of TC on Mon. The first one wasn't too bad, and I'm hoping for the same with this one. Good luck with your decision.

Oncotype Dx test...

Comments

Categories