Oncotype Dx test...

I am waiting for the results of my oncotype test, also.  My onc said it would be about two weeks, so I'm trying not to think about it too much between now and then. I know it will make the difference between having to have chemo or not, and I'm crossing my fingers for a low score!

Thank you, Doreen.  A woman from the test company called this afternoon and told me that my insurance company has a contract with them, so my test will not cost me anything. I feel lucky about that!  I am a bit concerned about my score because of the grade of my tumor, but I'm really glad this test exists and I will grit my teeth and go through with the chemo if my onc feels my score warrants it. 

sandilee -  the grade of my IDC was either a 3 (biopsy) or 2 (lumpectomy) -  I wasn't sure which was correct - my oncologist said to go with the grade from the lumpectomy since there was more tissue there to look at.   My recurrance score from oncotype was a 19 -   at the low end of the intermediate risk group. 

Harley - I'm really sorry to hear that your insurance will not cover the oncotype DX  -  I know that genomic health (the maker of oncotype DX) will appeal the insurance decision several times to try to get it covered.  I've seen many examples of their appeals working from women here.  I'd suggest you ask if you can send them a copy of your 2006 tax return ... I currently don't even have all the info I need to work on my 2007 taxes ...  I think that it would be a reasonable request to see if they can work from your 2006 returns - I suspect they are trying to discount the cost of the test for you and would base the cost on your income - if your insurance refuses to pay ...    

I hope you can get this straightened out soon ... sorry you're having to worry about this!  

Doreen  

Hello there, I am 37 years old and have stage 1 grade 2 estrogen positive, clear margins and lymph nodes.

My onco score came back at 20. I had a hysterectomy and have come off my hrt so am going through menopause. I am fine with radiation but am not sure about chemo. I went through chemo last year for a different type of cancer and would rather not do it again. My onco score gives me a 13 per cent chance of recurrence. Does anyone know if this will become lower with radiation and arimedex?

My score was a 20.  I joined the TailorX clinical study and since I was in the intermediate range I was put into the arm of being radomly picked to do chemo and Tamox, or just tamox.  I was chosen for just tamox.  Very tough decision.  BTW, my insurance also denied paying for it all the way thru the appeals, but since I joined the study Genomic called and said I did not have to pay anything.

Just received my score this afternoon!

 I'm at 19.  My onc was happy with that score, and didn't feel that chemo was necessary.  He put me on Femera. 

 I'm so relieved.  He didn't even get into the percentages of benefit- chemo vs. not, but just said that I was so close to the low range- one point beyond on the  low risk end of the continuum -that it wouldn't be worth doing.

I trust this guy (known in my community as one of the very best) and believe he was recommending what he would recommend for his own wife. 

  He also mentioned that he feels the real percentages  for recurrence are actually lower than the test reports, primarily because when this study was done with the thousands of participants in the 80s, they didn't check the lymph nodes as closely as they do now with the new staining techniques. So many of the study participants likely had positive nodes  that were not detected. He felt very comfortable just putting me on the aromatase inhibitor.

  One interesting thing for me was that the genetic test considered me pr negative, unlike the path report that put me at 1% positive. My negative pr standing was considered in my oncotype score. 

  I am happy with the result and with my oncologists take on things, and I wanted to post this for others looking to compare information.

Hi I actually spoke with my oncology nurse today and she said the onco score is mostly about the tumor that was taken out. After the onco score your doctor will plug some more info in and then let you know how much lower your recurrence percentage rate will be with chemo, radiation and tamox and such.

I am wishing you a very low score and quick recovery! 

Oh my gosh, something else to worry about. Didn't think I may have to pay for this test myself maybe! We are supposed to be more stress free right now. Am waiting for the test results. They said the 28-29th. Otter, have you heard about yours? How long did they say it would be for you?

Artsee

Otter,We are going thru the same thing. The lady in San Fran. was supposed to call me on the 14th. By Mon. the 18th when I had heard nothing, I called the local onco nurse.She called them and they said they could not get a hold of me.LIE! I have caller I.D. and voice mail. NOTHING on them. They finally admited lying.So..that put me back one week by the time she called and asked me a bunch of questions, and then my tissue was sent out.

So I'll be looking at the middle of March by the time they do more tests which they haven't done yet either.

Hope we don't come up with something else before they get this problem fixed.

I'm getting tiered of everyone asking how the treatments are going.

Then I have to give them this same song and dance over and over.

Phew...I feel a hell of a lot better now..:)

Artsee

wishiwere,

Did you mean there would be NO cost to the patient, if insurance would not pay?   That sounds like it might be what you meant to say.

otter 

Tender, you are right.  I worked in biomedical/clinical research for 25 years and was director of a (very small) diagnostic laboratory for about 10 years.  Turnaround time was critical, as was proper tracking of samples and reports.

So this sort of thing really burns me! We're talking about samples and tests that are critical to management of invasive carcinoma.

I did call the path lab to ask them about something else, and we started talking about Oncotype testing.  He said, "Oh, it's no problem at all. As soon as we get a call from the oncologist, we cut the sections to make the new slides and send 'em over."  So, I don't think the delay was at that end.  It's far more likely the oncology nurse never made that call in the first place.  Hopefully once I prompted her, she did.

The only thing that keeps me from calling them every day is a paper I read a few days ago.  It said a delay of up to 12 weeks between breast cancer surgery and the start of chemo had no (significant) impact on the patient's outcome.

otter 

The pathologist's choice of the most appropriate surgical tissue on which to do the recuts for the Oncotype is critical when you've had multiple surgeries. So sorry Ann that this was your situation. You make a very good point, although patient's shouldn't be expected to be saying this to pathologists or breast surgeons. Can you imagine? On the other hand, isn't it called personal advocacy.



Otter, I think of you, and wish they'd just hurry up and get things done. Maybe your oncologist could FedEx Overnight given the circumstances.



Tender

This Oncotype waiting game really has me blue today.

I lay awake early this morning, trying to figure out how to solve this problem.  Tender, when I talked to my onco's nurse this past Monday (Feb. 25), she said it's standard procedure for her to FedEx the slides to Genomic Health once she gets them from Pathology.  She promised she would call the Pathology Lab "right away" to remind them about the slides. She was on clinics at the time, though, and she called me during her lunch break--so I don't really know when, or if, she called pathology.

I do have the phone number for the Path Lab.  I already called them last week, to ask them something about my path report.  I mused this morning about calling them to check on the status of the slides for Oncotyping, but I don't want to be overstepping my bounds as a patient.  I don't even know if they could access my records at their end to tell me if the slides had been made.

My onco's nurse does not work on Fridays, so I can't call her.  Based on my experience from the past couple of weeks, my onco's office does not even return phone calls on Fridays.  Their voicemail does give a number to call in case of emergencies, so I guess if I was having a life-threatening reaction to chemo, at least I could get help.

My dh, who has been just as angry as I have about all this, is trying to calm me today.  He notes that I can call the onco's office first thing on Monday to ask about the slides.  There's not much I can do before then anyway, so there is no point worrying all weekend about it.

I finally decided today that, until informed otherwise, I am going to consider myself "NED".  After all, it's technically true at this point (mastectomy with negative nodes).  It makes me feel so much better while I wait for the next step.

Thanks for all the help and encouragement.  I would say, "You don't know how much it means to me," but you really DO know. 

otter 

Otter, this must be so frustrating for you!  Even though the outcome won't be affected, the waiting is just too much stress. 

I'm sure you have thought of this yourself, but have you started looking around and getting referrals for another oncologist? This office really doesn't seem to be on the ball, at least not where you're concerned. I can't believe that you're still messing around with this.

I think it took three days for the San Francisco company to receive my slides after my onc appointment.  Granted, I'm in southern California, but the transit doesn't seem to be the problem.  I feel your frustration! 

Do they do the oncotype test on people who are HER+ as well or do they just assume you will have a high score regardless of other factors?  Also, my biopsy sample was so small, I don't know if they will have enough for oncotyping.  I am meeting with oncologist today anad will ask.