average wait time for oncotype results

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JuniperCat
JuniperCat Member Posts: 658

Hello! I am wondering if anyone can shed some light on this. I had lumpectomy surgery for IDC 1.5 cm tumor on Nov 11. It was Er+PR+. When I saw my surgeon last week (Dec. 8) I asked her about the oncotype text. She said it hasn't come in yet. Is it normal to take this long? I also had high grade DCIS that required another excision. Do they test that as well? Many,many thanks!

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited December 2015

    Juniper, seems long to me...maybe the thanksgiving holiday has caused delaye? It should take no more than 3 weeks.

    MsP

  • JuniperCat
    JuniperCat Member Posts: 658
    edited March 2016

    thank you for your reply...it does seem like a long tim

  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2015

    I would request that your doc contact the lab. Sometimes the results don't get sent, or are sent and lost. There are two separate tests, one for invasive cancer and a different one for DCIS. Since your invasive component would be more likely to drive systemic treatment decisions, it is less likely that the DCIS testing would be done.

  • Professor50
    Professor50 Member Posts: 220
    edited December 2015

    If I recall correctly, this is similar to the timing for me. I had my lumpectomy two days before Thanksgiving and got my oncotype results while out Christmas shopping. It seems to me that I did not have the information until a week or so before Christmas.

  • JuniperCat
    JuniperCat Member Posts: 658
    edited March 2016

    Thank you for your replies. I'm starting to think that the results may have been lost. I'll ask the doctor to check.

  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited December 2015

    Are you certain the test was ordered? It was not until I met my onc, a couple of weeks after surgery, that the oncotype was ordered. In my hospital, at least, beause it is a test specific to the chemo-or-no-chemo decision, it is only the medical oncologist who handles chemo-related testing . Before ordering the test, he had to ask me if I would be willing to have chemo if it were recommended. Had i said, no, then no test. I said yes.

    It seemed to take forever. I actually called the oncotype people and they were able to tell me how far along the test was. To tell the truth, the first time I called, there had been a glitch in the system and my sample was still sitting in New Hampshire.

  • grammakathy
    grammakathy Member Posts: 407
    edited December 2015

    my experience was the same as Brookside. Once the MO ordered the test, it was three weeks. The oncotypelab is in central California and they physically send the tumor sample to the lab. There could have been a delay with the pathology lab sending the sample or it might be longer ahipping time than mine since I live in Southern California.

  • JuniperCat
    JuniperCat Member Posts: 658
    edited March 2016

    Hmmnnn...I'm not exactly sure now if it was actually ordered

  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited December 2015

    Have you met your onc/MO yet? If not, you can ask for an appointment. They set me up with the MO (systemic treatment) and RO (local treatment) both on the same day, one right after the other. It was great in that I had a good understanding of all the treatment they had in mind for me, including the possible chemo. It was a lot of information, however. My onc (who clearly had experience with zero retention patients) actually took notes and sent them home with me!

    By the way, there is probably no rush (in their minds, at least) for this result. The normal routine is that you will have rads once your incision heals, then either chemo or an anti-hormonal Rx. It will therefore be a month or two before you can start chemo (which we all hope you will not need).

  • coraleliz
    coraleliz Member Posts: 1,523
    edited December 2015

    I received a call from Genomic health(oncotype people) when they received my sample. Then my results came back in just over a week. I would call Genomic Health & ask if they received your sample yet.

  • MissV123
    MissV123 Member Posts: 79
    edited December 2015

    I had lumpectomy for IDC on Dec 4th, the two nodes removed during surgery were bad so my surgeon removed more....she called me this past Thursday and said that out of 24 extra nodes removed only 1 tested positive and it was sent for oncotype and I should have the results by Jan 6th ...when I made my appt with onc, I asked if they thought it would be back and they said it should be.....so I think you are waiting a little to long , call your docs and check up on that.....good luck, stay strong.....

  • BethL
    BethL Member Posts: 286
    edited December 2015

    my sample was send the week of Thanksgiving and my doctor called with the results dec. 10, about 2 weeks. She didn't send it off right away. Tumor was excised late August. It was the medical oncologist, whom I haven't met yet, who requested it be sent so he would have the results before my first appt. The lab who runs them called me regarding the financial part of it and said I could call with any questions, so call. I would. That is a long time. Waiting is so hard.

  • lyzzysmom
    lyzzysmom Member Posts: 654
    edited December 2015

    My result took less than 2 weeks last year. The lab also called me about finance and were extremely helpful. They even put me through to the tech who was running my test to tell me how it was going and answer any questions. He also told me that my mo had an account where the results would be posted without him waiting on a call or mail. If your sample has indeed be sent you could try contacting Genomic Health. They really were exceptionally helpful to me.

  • windingshores
    windingshores Member Posts: 704
    edited December 2015

    It took two weeks but I think they rushed it for me. DCIS is HER2+, I was told- not sure if that is always or often or sometimes- but therefore an oncotype would not be done on it, I would think. Anyone know?

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2016

    Hi:

    This is my understanding as a layperson. The Oncotype test for DCIS is not offered to patients with invasive cancer (in the same breast). To the extent that the DCIS test has been assessed for its ability to do its job, such testing has been in patients with pure DCIS. See for example:

    http://link.springer.com/article/10.1007/s10549-01...

    In patients with pure DCIS, the DCIS test is used to aid in decision-making about radiation therapy in patients treated with breast conserving therapy. In some DCIS cases, it may be appropriate to skip radiation therapy.

    In contrast, with limited exceptions, the NCCN guidelines provide for radiation therapy with all invasive disease treated by breast conserving surgery, even if node negative.

    The above is why the DCIS test is not offered to patients with invasive disease (in the same breast).

    For those with pure DCIS, the DCIS test generates individualized estimates of 10-year risk of any local recurrence (DCIS or invasive) and invasive local recurrence following treatment by breast conserving surgery alone. Not all DCIS is HER2+, but in any event, HER2 status is not relevant for the DCIS test. The eligibility requirements for the test for DCIS and invasive cancer are not the same. Regarding Oncotype for DCIS, the eligibility requirements are described here:

    http://breast-cancer.oncotypedx.com/en-US/Professi...

    • For women with ductal carcinoma in situ treated by local excision, with or without tamoxifen.


    The above is probably a broader statement than what occurs in practice in the clinic at this time, due to the characteristics of the patient populations in which it was tested (selected DCIS patients). In addition, the test for DCIS is still not included in the 1.2016 version of the NCCN guidelines for Breast Cancer.

    Nevertheless, anyone interested in the Oncotype test for DCIS should not hesitate to ask their medical oncologist for current professional advice regarding eligibility and the potential utility of the test in view of their particular presentation.

    BarredOwl

    [Edited later to add clarifying statement: "(in the same breast)"]

  • Girl53
    Girl53 Member Posts: 225
    edited December 2015

    I am also awaiting Oncotype results...MO sent my sample two weeks ago tomorrow and said it would be two weeks. But during Christmas week probably won't hear anything? Radiation treatments scheduled to start Monday, Dec. 28, but they told me I'd have to push this back if no Oncotype results (sequencing would be chemo first, if test score indicates, and then rads).

    Is this a situation where calling Genomic Health might be good? Have appointment set up with MO for Tuesday, but no point going in if no results to discuss.

    My tumor was only 2mm, and I've read that this amount of tissue might not be enough to run Oncotype test. I called to ask MO office about this two weeks ago (didn't want to wait weeks for test results, only to be told they couldn't even do test), and they never called me back. Is it safe to assume that someone would have called me back by now if not enough tissue?

    Wow, this waiting feels hard during Christmas week. So hoped to be over this hump by now, with less uncertainty. Anyone else find this particularly difficult during the holidays?

  • Girl53
    Girl53 Member Posts: 225
    edited December 2015

    Didn't hear anything about test results last week, but did get a call from Oncotype people making sure I could pay the portion of charges not covered by insurance! The billing person told me she would have someone from the lab call me re: actual test status, but that didn't happen.

    So I called Oncotype this morning, and was told that my tissue sample has never been received. My onc's office knew that the sample had never been received, they implied. Onc's office, each time I've called, just kept asking me to call back for status.

    When I contacted them today, they said that a billing issue was holding us up (wrong). Then they said that lots of patients' results have been delayed due to the holidays. They they said that the Oncotype folks are undergoing some "changes" (organizational? financial?) that caused the lapse.

    I am so angry and frustrated. I can't plan anything. Treatment has been delayed. Is this dangerous, health-wise? At least two doctors have told me to proceed...but I can't! Lumpectomy was Sept. 3...and on Dec. 28 I STILL don't know what I am dealing with, for God's sake! Don't know why Oncotype wasn't requested long before it was. Don't know why my BS told me I didn't need the test -- and my tissue sample was too small anyway -- and then onc had completely different take...then his office has messed the whole thing up and failed to communicate.

    While some aspects of this journey have gone well, others have been so scary and upsetting. If I had to describe this part of it, the title would be: Don't let this happen to you. Don't assume that even doctors with good reputations (or their staffs) will connect the dots. Stay (politely) on top of everything.

    Thanks for listening. I usually try to stay pretty positive, but it's hard on this particular day. This kind of situation probably isn't unusual...it just feels BAD.

  • doxie
    doxie Member Posts: 1,455
    edited December 2015

    Girl53,

    I feel your pain. My results were delayed due to some mix up. I started chemo almost 90 days after an excisional biopsy. I too had clear sentinel nodes, so haven't' worried about the delay. Basically, if you start chemo within 90 days of the surgery, you should be fine, especially if your are stage 1.

  • Girl53
    Girl53 Member Posts: 225
    edited December 2015

    Doxie: The waiting has been awful, and draining, but the possible health compromise is what worries me. I had my lumpectomy on Sept. 3...four months ago. Sentinel node biopsy Nov. 19. Am I still okay? Stage one, tumor very small, path report said low mitotic rate and no LVI. But still....Just want to get the treatment, whatever it winds up being, underway. I wouldn't wish this on my worst enemy.

  • doxie
    doxie Member Posts: 1,455
    edited December 2015

    No one can really say if you are safe or not with the wait, but with a tumor so small, grade 1, negative nodes, and no other factors, it seems very unlikely you even need chemo. Radiation, even delayed would mop up any stray cells, if there were any. My RO really saw radiation as a way to stop other cells from generating cancer, as much as destroying any stray ones.

    I watched my tumor grow from a tiny grain to 1.5 cm over about four month period before it was removed. It took me a while to decide it needed to be looked at, then no one thought it was BC due to it's odd location. Thankfully they still thought is should be removed and tested. I'm fine nearly 4.5 years out and I had a higher grade and required chemo due to the Oncotype score.

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited December 2015

    Girl53, What has happened to you is beyond unacceptable and you are right to be steaming mad and concerned about your health. Why would you trust an oncologist who has a bunch of lazy uncaring people in their office who lie?? I was steaming mad when I found out that the tissue the lab sent to Genomics after my surgery didn't have any cancer in it. WHAT! I was told by my surgeon who ordered the test to just let my oncologist handle everything. NO WAY! I contacted the lab (I still have to thank the kind lady on the phone who gave me the direct line to the technicians) and they corrected the problem the same day and told me that they would expedite with Genomics. Not to leave anything to chance, I called Genomics the next day to confirm that they had my sample, it was expedited and then I called later to confirm there was cancer in the sample. I'm sure my oncologist wouldn't have gotten things done as fast as I did. Although I have always been a control freak, the whole cancer process has reinforced to me that the world is full of incompetent, uncaring people and we have to over-function to compensate for their lack of skill, lack of attention to detail and overall general laziness.
    Get mad and get loud!!
    MsP
  • Girl53
    Girl53 Member Posts: 225
    edited December 2015

    Doxie, I am hoping not to need chemo and that this all ends up a moot point; it's the PR- status that I've heard can push you up into an intermediate Oncotype score/unclarity re: whether chemo helpful or not (all other path report factors look good). Not sure...this is just what I've heard. That's main reason I'm concerned about treatment delay.

    MsP, what an ordeal you went through. I have made a conscious decision to give onc's office the benefit of the doubt on this one, for now (though I will check with Oncotype folks to make sure tissue sample received, etc.). They seem like caring people, but these errors/omissions are hard to take and make you wonder what else is slipping through the cracks. I will firmly but politely get this process done!


  • doxie
    doxie Member Posts: 1,455
    edited December 2015

    Girl53,

    You may be correct on PR- putting you into the intermediate zone. Mine was only 5%, but what likely pulled it down also was a very high Ki67.

  • Brimton
    Brimton Member Posts: 87
    edited December 2015
    Hi all
    I too am waiting. FRUSTRATING. I think mine was sent 12/24. With Christmas and new years it will probably be held up. I have oncology appointment 1/5 and rad 1/6. I hoping it's back by then. Fingers crossed. I just want you all to know I feel your pain. Do they ALL go to Genomic Health? Wow I would think there was more than one place! Living with the unknown is stressful.
  • Girl53
    Girl53 Member Posts: 225
    edited December 2015

    I had better day yesterday with the waiting, now am feeling upset and on edge again today. Trying to be patient with myself and say, "I am developing new emotional and spiritual 'muscles' that are healthy here and will help me in other situations, too." So good to know none of us is alone. Am praying for somewhat less uncertainty in the New Year.

  • Brimton
    Brimton Member Posts: 87
    edited December 2015
    Hi everyone
    I have a bit of information. I called Genomic Health. Waited 30 minutes! My tumor is still at the path lab. Arrggh. Maybe sent today. But what you all need to know is that it takes14 days. They run your test as soon as they get your specimen. Then they call you to see if you can afford the out of pocket expense. I just find it surprising that there is only one place that does this testing.
  • grammakathy
    grammakathy Member Posts: 407
    edited January 2016

    The reason that only one place does this test is that they were the ones that developed the theory and what criteria to look for. I believe it is like drugs that are protected for a number of years before generic ones can be made. The original manufacturer gets to recoup some of their investment before others have access to the process. I had to wait until I met with the MO before the test was ordered. It seems to me that the tumor should be automatically sent for testing after the original surgery. But on the other hand, my MO would not have ordered the Oncotype DX test if I had not been willing to have chemo if the test recommended it. My Oncotype was ordered two months after my surgery and then the results came back two weeks after that. And that was in the month of December 2013 with holidays. Best wishes to those waiting. Waiting is the hardest part of all.

  • PatRN10
    PatRN10 Member Posts: 332
    edited January 2016

    Mine took 3-4 weeks as the lab at my hospital did not send enough specimen.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited January 2016

    They usually don't send off a sample for Oncotyping until they have a path report with full information as to ER/PR//Her2 status, size, grade, mitotic rate, nodes and margins. My BS' nurse explained at my pre-op “teaching session" that Oncotype testing is usually not done for Stage IA tumors so favorable that chemo is obviously unnecessary, nor for tumors showing signs of aggressiveness such as hormone- or HER+ status, grade 3, node involvement, non-clear margins, and size. They save it for those in a “gray area," where a grade 1 or 2 tumor may be >1cm but <1.5, have PR- but ER+ and HER2- status, have only one positive sentinel node, and need a second pass to get clean margins. MOs like to meet with the patient first to discuss this, since not all insurers cover Oncotyping 100%; yet such tumors may or may not even respond well to chemo, because chemo works best against fast-dividing cells.

    Mine was in a “gray area" because it was 1.3cm, though the ultrasound predicted .7 and the biopsy .9 at most. My surgery was 9/23, I got the path report 9/27 and met with my MO 10/1. She said she was 90% sure I wouldn't get any benefit from chemo, but Oncotyping was a good idea to make certain. I agreed, and got my score back 10 days later--16, or near the upper end of “low." By that measure, adding chemo would have lowered my 15-yr, chance of recurrence by only <1% over that of radiation + AI alone. (Recurrence, not survival).

  • Brimton
    Brimton Member Posts: 87
    edited January 2016
    Thank you all for the information

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