KI-67 test never done during biopsy and told no now when asked

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PSW
PSW Member Posts: 16

Growing very tired of working w Kaiser but feel everyone in the state of Oregon treats only by the book. I had asked a month ago for my first MO to go back and have this test done after I got mad that it was never done in the first place back after june 13th when the lump was taken out. so a week ago I had a meeting w MO number two. don't like her much better but asked her to make sure that the KI-67 test has been done or was in the works. she looked me right in the face and said no we refuse to do that test even though u asked us for it. so she denied me it. ugh I have read others out her that have had it done and I wanted it to help me base My chemo/no chemo choice off of along w other factors but now I am mad. since it came from me the request can they really tell me no? should it have been done? can I go back after them for not doing it when they should have? sorry if I sound mad but I am looking for ppl out here who know if this is standard of care or should have been done? and what action I can take against them if any to make them do it. I am only looking for help from anyone out here who has knowledge about this one test and can tell me if my patient rights were violated by them. thanks for all your help so far

I also had to order my own copies of all my reports from my doctor for the surgery report to the lump report. but now I believe that I should have been right away sent copies of all of my reports as soon as they were ready. is this correct? just looking to hear from others if they had to fight to get copies of reports too.

Comments

  • muska
    muska Member Posts: 1,195
    edited August 2016
    Hi PSW, may I ask why you want this test? Based on your profile I think chemo will be recommended no matter the results.
    I live in MA and I don't think this test is standard of care here.
  • NancyHB
    NancyHB Member Posts: 1,512
    edited August 2016

    Hi PSW. My first thought was the same as muska's: with such a large tumor, it seems chemo would be strongly encouraged.

    My lab didn't do the test when I was first diagnosed four years ago. My MO believes the results are unreliable. When the lab started doing the test a year later he happily sent my tumor over for testing because I was curious, but I'd already had chemo and it wouldn't have changed my treatment.

  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited August 2016

    If you read people's signature lines here you will see that most people who are stage 3 with positive nodes will do chemo. Yes, it's a bummer but we need to use every weapon we can against this nasty disease


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2016

    My MO never ordered the Ki67 test. I was stage IIIA, triple positive, Grade 3, and bound for chemo anyways. Why do you think a Ki67 test would make a difference, given that your tumor is over 5 cm. and you have 5/10 nodes positive? Does it make a difference with ILC as opposed to IDC? I have IDC; can't really speak to ILC. Good luck!

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

    I didn't have the test either though I did ask about it. I was told that Scripps doesn't do it. I did chemo even though I am grade 1.

  • jojo9999
    jojo9999 Member Posts: 202
    edited August 2016

    When I asked my MO about Ki67, he said "well, that's the poor man's Onocotype score" implying that knowing my oncotype score meant no need for a ki67 score. He also said that it is not a reliable metric. So here is a question for the boards: are these scores, whether ki67 or Oncotype, etc. useful to have beyond a chemo decision? I think if I were in PSW's position, I would be frustrated to know that ki67 isn't done, and Oncotype testing isn't called for because chemo is a given. We all want as much info as possible. Would we maximize this information by having our genome or tumor sequenced? is that not too far into the future?

  • readytorock
    readytorock Member Posts: 199
    edited August 2016

    I know my K167 score (and it is VERY high) because it is on my report, but not one doctor has EVER mentioned it in discussions about my treatment plan or prognosis. I had a second opinion at Dana Farber in Boston and not a word of it there, either.

    I think Oncotype trumps K167 score and that K167 score is rarely used as a factor anymore. I've never discussed it though, so just my opinion.

  • muska
    muska Member Posts: 1,195
    edited August 2016

    Oncotype test is for women with DCIS. They have started using it on women with IDC if only 1-3 nodes were positive. The jury is still out on how useful or accurate it is for women with IDCs. No oncotype is done for stage 3 - the cancer is already locally advanced.

    Being stage 3 myself i have not had much interest in getting tests that do not matter for treatment decisions and are not very reliable to begin with. At one point, I asked my MO about CTC - circulating tumor cells - whether she can do it. She said she can but she doesn't do it because they don't know what to do about the results.

  • KathyL624
    KathyL624 Member Posts: 217
    edited August 2016

    I have never heard that about oncotype. I thought it is well studied for IDC...in fact isn't the TaylorX study strong evidence of this? I believe it is only recently that it has been used when any nodes are positive. They do have a separate scoring for DCIS

  • Icietla
    Icietla Member Posts: 1,265
    edited August 2016

    "The test is intended for use in all newly diagnosed patients with early-stage (stage I, II or IIIa), breast cancer who have node-negative or node-positive (1-3), estrogen receptor-positive (ER+), HER2-negative disease."

    Source: http://www.genomichealth.com/en-US/oncotype_iq_products/oncotype_dx/oncotype_dx_breast_cancer

  • GraceB1
    GraceB1 Member Posts: 213
    edited August 2016

    They don't automatically send you copies of your test results. You have to ask for them every time. I found an error on MRI that made no difference (stated left instead of right hip replacement) in treatment but I let them know it was wrong and got a corrected report. I got a KI67 but no oncotype test but I have a very rare type tumor. The MO said I was getting chemo so the test was unnecessary.

  • edwards750
    edwards750 Member Posts: 3,761
    edited August 2016

    I for one am grateful for the Oncotype test. I dodged chemo because of my low score. A radiologist friend said it is very reliable and a lot of oncologists are using it as a guide for treatment. My oncologist said they had been over treating women for years so this test has been instrumental in determing the benefits/or not of chemo. It's not a perfect test - no test is. It also tells you the likelihood of a recurrence by percentages. Mine was 8%.

    My BC is IDC, Stage 1b, Grade 1. My score was 11. I will be 5 years out August 22.

    Diane

  • jenjenl
    jenjenl Member Posts: 948
    edited August 2016

    never had that test. TN so chemo was happening regardless.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2016

    Excellent article kayb! That is one for the file!

  • Leighku
    Leighku Member Posts: 26
    edited August 2016

    Hello. I'm not sure whether or not your doc has ordered the oncotype test? If so, you will not need the ki67 because they will do it at the lab during onco test and will use the results, along with many other factors, to determine your score and need for chemo. I did get ki67 but not the onco. 2 tumors at biopsy were 81% and 87%...that kept me up many nights!!! After surgery the results were 35% and 65%. Still terrible but way less than first lab tests. Doc said he did not like ki67 because each lab does it differently and said if I tested tumors again....I would get a different number. I was positive LVI, multi centric with 3 tumors and grade 3 so he said I needed chemo and didn't need oncotype test. Still regret not knowing better to demand it at the time. I just want to know for information....prob like you with the ki67. Good luck to you.

  • pupmom
    pupmom Member Posts: 5,068
    edited August 2016

    The Oncotype test is only for those with 0-3 positive nodes. PSW had 5 positive nodes, therefore would not be eligible for the test.

  • Leydi
    Leydi Member Posts: 146
    edited August 2016

    Just a little more reassurance. I met this week with my MO for the first time. We went over my information very carefully. While he was surprised that the KI-67 test was not performed, he did not think that we should go back and run it now because it would make zero difference to my treatment plan. He likes to have the KI-67 because he is curious and the factor does influence the likelihood of a recurrence. What I found strange is that he then GUESSED at what he thought my KI-67 might be.

  • PSW
    PSW Member Posts: 16
    edited August 2016

    Thanks for all the reply's back it was of some help. but what I cant help but notice is that most of you that got back to me had good info to share about your breast cancer which for most of you is IDC and mine is ILC do you realize that there is a difference between the two all though so far the two MO'S that I have seen just treat us all the same. which I believe is wrong. My breast cancer ILC doesn't respond very well to chemo. and in many studies it shows that the chemo I am on right now my give me a benefit of a whopping 0% all though for some no matter what chemo is used there is no benefit to gain. I did my home work and talked to ppl out here cause I don't think that a one size fits all treatment program is treating the breast cancer and the person the way they should be treated. hint why I asked this question out here . where as IDC does do well w chemo and often chemo is needed since it does like to come back as stage 4 much more then ILC does. what most ppl say and what I have read is that hormonal therapy is what is best for ILC. and that even if no benefit to chemo is gained at least the long term outcome is no worse. as far as the oncotype test when I called the folks that run that test they did say to me that it can be done for more then three nodes positive but my size at 6cm is two large as the cut off is at 5cm ugh. I still feel that I may be doing chemo for no gain and this doesn't sit well w me but in tell some thing changes that's just my two cents.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2016

    PSW, I share your frustration over ILC treatment. It is now known that ILC has a different genetic profile than IDC, but not much is known yet about how to tailor treatment specifically for ILC. Maybe it will help you to know that chemo did work extremely well for me with stage iv ILC. And after you are done with chemo, you can know that the aromatase inhibitor they will likely prescribe (probably letrozole) is considered a very good ILC treatment.

  • Jennie93
    Jennie93 Member Posts: 1,018
    edited August 2016

    PSW, my situation may be different since mine was nearly 4 years ago and maybe they didn't do these tests routinely, I don't know. But I never got the KI-67 test and I never got the OncotypeDX test. I knew nothing about these things at the time. It would not have occurred to me to ask for them later when I did learn about them. At the time of my surgery they found cancer in 3 nodes so that was it, I had to get chemo and rads. No test would've changed that. Likewise I never would have agreed to chemo if my nodes were clear, no test would change that either.

    No one ever sent me, or gave me, any copies of any of my test results. The docs act like it's some kind of secret only they can read. I did eventually get a copy of my path report from surgery but I had to ask for it..... Persistently, as I recall.



  • jenn32214
    jenn32214 Member Posts: 89
    edited August 2016

    And who is supposed to order the Oncotype test? My pathology report after surgery was very clean, so my BC said I didn't need chemo. But given what I'm reading here, and my family history of cancer, T'd still like to have the test. I'm currently undergoing radiation, and presumably will meet with a MO after that at least to discuss hormone therapy. So who should I ask about the oncotype test?


    Thanks

  • Smurfette26
    Smurfette26 Member Posts: 730
    edited August 2016

    jenn32214 your Oncologist would be the person to ask about the OncoDX test.

    PSW my cancer was lobular and all low grade. My KI67 was less than 9%. I had one positive node. No LVI. My Onc did suggest the OncoDX but it's not covered be Medicare here in Australia and I didn't have a spare $4,000 to pay for the test. In the absence of an Onco score and although I knew that both Lobular and low grade cancers are less responsive to chemo I went ahead with 4 rounds of Taxotere/Cytoxin. Even with the 1 positive node radiation was not recommended for me. We make treatment decisions that we feel are best for us with the information that we have. Wishing you the very best. Donna.


  • Denise-G
    Denise-G Member Posts: 1,777
    edited August 2016

    With a 6 cm or larger tumor, I've never heard of anyone that was not recommended chemo.

    I've talked with thousands of breast cancer patients. My MO was one of the authors of

    this, also posted above by KAYB.

    http://jco.ascopubs.org/content/early/2016/02/05/JCO.2015.65.2289.full.pdf+html


  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited August 2016

    My MO said she is ordering oncotype tests on all of her Stage III patients. I was Stage I, so didn't pursue it much, but she said it helps her understand how aggressive the cancer is. How she uses that information, I have no idea.

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