anyone not get an oncotype test?

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  • edwards750
    edwards750 Member Posts: 3,761
    edited January 2014

    I would ritagz...I had the Oncotype test done; my score came back@11. My Oncologist ordered the test(I had never heard of it either) because I had a micromet in my SN. My BS said that would get me chemo which of course I didn't want to do - who does - but my Oncologist wasn't convinced that was the right treatment plan. I was Stage 2, Grade 1. My Oncologist said the test was being used more often than not because she admitted women were being overtreated and the test affords them more information to make the appropriate treatment plan. It is pricey but my insurance BCBS paid for the test. It has to be authorized by your insurance company before your BS will send them the tissue samples. Also, Genomic Labs, the company who performed the test, will work with you on a sliding scale if insurance won't pay for the test. It takes about 10 days to 2 weeks to get the results back. I was a basket case until I got the call from my BS' office. I have to admit I would have a problem with a doctor saying no need for the test but maybe they are under such pressure from insurance companies about over-prescribing the test that they make a judgement call. That wouldn't make me feel warm and fuzzy. No guarantees of course but both my BS and Oncologist have a lot of faith in the test. It also affords me additional information about my particular tumor which was also deemed to be non aggressive. I don't think you can get the test w/o your doctor ordering it but I think if it were me I would press for the test. After all it is your body and your life and your cancer. It is really sad that $ has to play such large role in determining treatment but it does. My BS' office told me BCBS should think about the cost of chemo vs radiation which is dramatic and allow the test whenever possible. BTW I had 33 RADS treatments vs chemo - it was a piece of cake compared to chemo. Good luck and be persistent...we all have to be our own advocates. Diane

  • corky60
    corky60 Member Posts: 726
    edited January 2014

    My understanding is that guidelines say that with the size, stage and grade of cancer that I had the Oncotype test is not recommended.  But I can't find the guideline or issuing organization that recommends that.  Sorry.

  • rilady
    rilady Member Posts: 5
    edited February 2014

    dx in December 2013, I had rt. br, gr I, stage I , < 1 cm, DCIS, tubular ca, 2 nodes neg,  her2-, er+/pr+ with lumpectomy and sentinel node dissection with one lymph node also neg... , no oncotype needed as per medical and surgical oncologists. No radiation needed as I am 67, newest studies have shown that women 65 and over who have had no  radiation with similar diagnoses fare almost no different than women who have had radiation . I will start on anastrozole 1mg daily for 5 years.

    I have done research and all seems to point out that oncotype is not needed. Part of me wonders what it would have showed, but do not want chemo anyway.  Thought of going to Dana Farber Hospital in Boston for a second opinion but am quite comfortable with my doctors opinions as I am in the neighboring state and my  docs all trained in the Boston area and are highly regarded.  The test is expensive, about $4000 but insurance does pay for it. Sounds as though you need to have a good conversation with your doctor or if you can, try a second opinion. Good luck.

  • KNardo88
    KNardo88 Member Posts: 54
    edited May 2016

    I know this is now an old thread but hoping this post bumps it--- Just caught wind that my oncologist isn't ordering an Oncotype DX for me, and I can't for the life of me understand why. Haven't spoken with him regarding this directly yet, so obviously I need to wait and discuss this all in great depth with him before I go too crazy here, but is there anyone out there who has had every reason to expect an Oncotype score to be ordered, and then not get it? For background, I'm stage 1, tumor was small at 0.9cm, node negative... But it was grade 3, LVI was present, ki-67 extremely high (80-90%, I believe), I am only 27, BRCA1 positive, and only "weakly" ER positive at 20%... PR and HER2 negative. I'm scared to have chemo, but will ABSOLUTELY DO IT if it means reducing my risk of recurrence and improves my survival rate. Am I illogical to think that maybe, given the factors I listed previously, that my oncologist isn't ordering the Oncotype DX because chemo is already sort of a given for me?? I'm being my own worst enemy by obsessing over this every second of every day, but had to put this out there for any insight you all may have.


    Thanks!!

  • sandcastle
    sandcastle Member Posts: 587
    edited May 2016

    I, did NOT have it....I am Stage 0 Grade 2....no Chemo, no Rads.....A Mastectomy.....I will be 6 years in December....Liz

  • PatRN10
    PatRN10 Member Posts: 332
    edited May 2016

    We have some similar stats. I think you are very reasonable to question this especially at your age. My stats are listed below. I was just grade 1. Don't know my ki-67 (wasn't on my report so probably not done.) My nurse navigator said I wouldn't need the Oncotype. "That's just for those who might need chemo". I was uncomfortable as my estrogen was just 25% so I wasn't sure that I should put all my eggs in the anti-hormonal basket. I spoke to my oncologist about my concerns and she thought they were legit and ordered the oncotype. My tumor was also small so they had to send samples a couple times and so results took longer. My oncotype came back in the dreaded mid range (which I was expecting ). I opted to take the chemo and have never looked back.

    I think if you are willing to do chemo if indicated then do not hesitate to ask. I am so glad I did! I don't understand why some women have the oncotype when they have no intention of doing the chemotherapy even if in high risk group with oncotype over 30. I respect the decision but why get the test?

    Keep us posted as to what your doctor said and what you decide. Good Luck!

    Pat

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited May 2016

    KNardo

    Think you have it right. With a high ki-67g, plus the absence of PR (tends to indicate Luminol B), at your young age, your oncologist is likely to feel that chemo is the best treatment option for you, although there is likely to be a tamoxifen or other hormonal follow-up.

    But, please know that chemo isn't as bad as you may have heard. Make sure that you discuss drugs that treat side effects, and they work. And we will be here for you.
    I should also tell you that on Facebook there is a Young Survival Coalition private group, if you would like to talk to women your age.

  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2016

    I agree with others that want all the information possible. Even if chemo is the route you will take it doesn't hurt to have additional info that oncodx or mammoprint offers.

  • KBeee
    KBeee Member Posts: 5,109
    edited May 2016

    With low ER, no PR, and high proliferation, MO likely will strongly recommend chemo. I have been through it twice. Everyone does differently. I tolerated it very well. I exercised the whole time, worked part time, never missed a school event for my kids, and just generally carried on with life. And ..... It is temporary. I considered chemo to be on my side, not the enemy. Cancer was the enemy; chemo was on my team to kick it to the curb. Best wishes on whatever you decide. Sorry you are facing this

  • kbutler
    kbutler Member Posts: 66
    edited June 2016
    KNardo88 with your stats chemo is likely to be offered is why the test wasn't done. I wanted it but Onc said I didn't need it that there was no way she would offer chemo. I think she would have done it if I had pushed it sometimes I wish I had but I have to trust her. They keep your Tumor frozen for a certain amount of years so I could still get it done but I've finished rads and onto tamoxifen so I'm just leaving it in Gods hands. Good luck with your outcome and your journey
  • melinky
    melinky Member Posts: 2
    edited June 2016

    KNardo, I too think that with a high ki-67 (meaning the cancer is a fast growing type), grade 3, the absence of PR, LVI, and your young age, your oncologist thinks you need chemo hence there is no need to order an oncotype test. Ki-67 is one of the elements used to calculate oncotype score so it's likely that your oncotype score is going to be high too. My ki-67 is 45%, my oncotype score is 40, putting me in a high risk group. All 4 oncologist I talked to said I need chemo even before the result on the oncotype came back. There are several countries that do not use oncotype score to decide whether or not chemo would be suitable or needed, but the oncologists decide whether or not to do chemo on other factors such as tumor size, grade, nodes involvement, ki-67, etc.

    Since your cancer is an aggressive type and you have LVI, you might want to ask your onc if a radiation after a chemotherapy would benefit you. This is what I'm going to ask my onc next time we meet. I didn't know about radiation post MRM until I started reading about LVI. I thought if I had bilateral mastectomy I didn't need radiation.

  • KNardo88
    KNardo88 Member Posts: 54
    edited June 2016

    Got my Anatomical Pathology report now that surgery has been completed (BMX 5/20), and now suddenly it says LVI - absent?! How does that even happen. I see my BS today, hope some of my questions will get answered by her today. Glad to see that LVI is absent on the report, but doesn't help my mounting trust issues with every medical professional I come in contact with....

  • soficachico
    soficachico Member Posts: 2
    edited July 2016

    I was stage Ia/grade 1/ER +/PR+/Her2-/BRAC negative. After lumpectomy (clean margins) and lymph node dissection (negative), my medical ONC told me the that Chemo was not necessary, only radiation. She also stated Onc test would not change her treatment plan for me so it wasn't worth doing (cancer was less than 1cm and caught VERY early). I work in the breast cancer research field and I know she is the best oncologist in the area/have absolute confidence in her plan. With that said, that is totally subjective for each one of us, listen to that little voice--get a second opinion or ask more questions until you are absolutely comfortable with the outcome.

    Best of luck!

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited July 2016

    I didn't have it though I asked. Since I had 1 positive node I was told to do chemo. Still I would like to know what it would have said.

  • kbutler
    kbutler Member Posts: 66
    edited July 2016

    I was told the same thing sofi. I wondered for some time if I should have insisted but she explained it the very same way to me that there was no way she would give me chemo. I even asked the RO about it and she said the same thing so I guess I have to trust them. I more so wanted to know recurrence score.

  • Wholenewworld
    Wholenewworld Member Posts: 29
    edited July 2016

    my Onc told me they need a minimum of 5mm in order to do the oncotype test. I was at 5mm and opted to do it if they could. Unfortunately, it was still too small and they couldn't do it. All my docs said they expected a very low score but I wanted to know anyway.

  • MerrySea
    MerrySea Member Posts: 1
    edited August 2016

    I was told that because I am Her2+ that I am not a candidate for the test

  • Cathymck
    Cathymck Member Posts: 1
    edited April 2018

    My cancer stage 1 grade 1 0/6 nodes. Clean margins. I had double mx - tho no cancer in rgt breast. MO offered the oncotyoe test, but said I would have to affirm willingness to take chemo if the score was high. I couldn't say I would take chemo... so she did not order the test. She said my risk looked low and test would likely be low.

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