Doc won't order Oncotype

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  • Togethertolearn
    Togethertolearn Member Posts: 278
    edited July 2019

    DorothyB,

    How did your doctor KNOW that chemo wouldn’t be needed? Mine said if it’s over a centimeter then a patient should get it. Well I guess it just goes to show that cancer is not an exact science at all. But it’s made and making much progress! Different doctors, different ideas... not just for cancer either.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2019

    mountainmia,

    Yes, that’s exactly my point. We all like to think that we won’t be in that small percentage that gets the rare se or recurrence, but someone will. My docs were floored by my pneumothorax, especially since my post installation x-ray looked fine. A nick with a slow leak is something none of them had seen after port installation

  • hopedreams
    hopedreams Member Posts: 85
    edited July 2019

    HI THERE IS NEW INFO OUT THERE..THAT ALL BREAST CANCERS DO NOT NEED CHEMO.. U HAD THE MASTECTOMY AND LYMPH NODES CHECKED.. IM SURE YOU ARE OBSESSING NOW OVER ONCO TYPE.. I NEVER EVEN ASKED FOR MINE.. I TOTALLY TRUST MY BREAST SURGEON THAT SHE KNOWS WHAT SHE IS DOING.. PLUS I HAD ANOTHER CANCER IN MY GOOD BREAST A YEAR AGO LAST JUNE.. I DID WANT ANOTHER MASTECTOMY..BUT SHE DIDNT WANT TO DO THAT..SHE GOT THE CANCER OUT WITH A LUMPECTOMY .THERE WERE 2 AREAS & 2 INCISIONS..IN MY " GOOD BREAST.". THAT IS NO LONGER THAT GOOD..ALSO WITH NO CHEMO OR RADS.. I JUST HOPE U ARE GOING TO A MAJOR CANCER CENTER.. THAT MEANS A LOT.. JUST GO ON WITH YOUR LIFE..AND TRY TO JUST NOT THINK ABOUT IT FOR NOW.. AND MAKE SURE U GO TO ALL FOLLOW UP APPOINTMENTS.. TAKE CARE.. ~HOPE

    `

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited July 2019
    Picturelover, I too had an Oncotype score of 12. If you don’t mind me asking, I am curious if you took an AI, and if so, for how long?
  • Togethertolearn
    Togethertolearn Member Posts: 278
    edited July 2019

    thank you I didn’t realize oncotype wasn’t done on site! Although I was grade 3 so an easy candidate for the test, the doctor seemed steering for me not to get it, so I assumed it was lots of extra work for him :) it was a bizarre appointment, Ihad to agree to get chemo if oncotype number warranted that or I would not have been given the test. That seemed weird too, I certainly will do whatever is best for me with the results, chemo or not. Test not back yet.

  • happyperidot
    happyperidot Member Posts: 53
    edited August 2019

    Hi. OP here.

    I met with my oncologist on July 29. She agreed to do the oncotype. The order was placed that day and as of today (8/1) the pre-auth was in progress. (It was the breast surgeon who turned down my request based on the tumor size.)

    The MO cautioned that insurance might not approve since 0.6 cm is minimum size for the test and I'm only 0.5. I get it; but at least she's willing to try when the BS wasn't. I'm also willing to appeal with ammo on family history, luminal b, presence of pre-cancerous cells in the other breast, etc. MO agreed those were valid reasons to seek the test. Plus, she also wants to know whether an AI or Tamoxifen is better for me.

    BTW, I asked to MO to confirm that I am luminal b. She said I am based on having very low Ki67 with a very low PR. She said I am the "mildest" B, but it's legit. That combination of clinical observation is apparently rather rare.

    Thanks for all your thoughts, everyone. :-)

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2019

    Kelley, glad to hear that your MO is trying to get you an Oncotype score.

    The Luminal B part is interesting. I've done a lot of reading and there appear to be two (or more) definitions. One puts all PR- cancers that are ER+ and HER2- in as Luminal B. The other allows for a PR- cancer (that is ER+ and HER2-) to be classified as either Luminal A or Luminal B depending on the grade and Ki-67.

    Within this second definition, if the Ki-67 is low and the tumor is either grade 1 or grade 2, then the cancer will be Luminal A. However if the Ki-67 is high (generally considered to be >15%) and the tumor is grade 3 (or possibly grade 2 if the mitosis score is a 3, since mitosis is an indicator of high proliferation) then the cancer will be Luminal B. Most low PR / PR- negative cancers have high Ki-67, so most will be Luminal B, using this definition. But not all.

    To my understanding, Luminal B defines tumors that have higher proliferation, higher grade and are more aggressive. Luminal B cancers are more likely to be larger and node positive. In your case, while your tumor is low PR, it doesn't meet any of the other criteria for being Luminal B. It seems to me, as a layperson and patient (and PR-, with a small lower grade tumor) that the more flexible second definition makes more sense.

    This article talks about the various definitions of Luminal A and Luminal B: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4656721/#!po=29.0698

  • TomMorrow
    TomMorrow Member Posts: 43
    edited August 2019

    Both of my wife's MO's indicated she was luminal A; 6mm, grade 1, 12% ki67, 90% ER and 5% PR. I specifically asked if the low/negative PR automaticallyclassified the tumor as luminal B and both responded that it did not. I find it interesting that MO's don't seem to provide consistent information regarding low/negative PR.

  • moth
    moth Member Posts: 4,800
    edited August 2019

    Glad you're getting the Oncotype OP! Mine ended up changing my entire treatment as Oncotype scored me as triple negative. If one of the receptors is weak, I think it's an excellent idea to check and see what the genomic pattern looks like.

  • april1964
    april1964 Member Posts: 223
    edited August 2019

    just curious: what defines luminal b?


  • happyperidot
    happyperidot Member Posts: 53
    edited August 2019

    I agree with Bessie in that my docs are probably applying the broadest definition in my case. I have a PR <5% and Ki67 5%-7%. Here is one paper that describes luminal b as having 3 sub-sub-types https://www.ncbi.nlm.nih.gov/pubmed/30655808:

    • LB-1 (high PR/high Ki67)
    • LB-2 (low PR/high Ki67) this one is usually most malignant and most likely to benefit from chemo
    • LB-3 (low PR/low Ki67) this one is most like luminal A (high PR/low Ki67) and has the most favorable DFS

    One could argue that we're splitting hairs; but on the flip side, we're also dealing with something that is very threatening.

    The thing about Luminal B's is that they tend to see a little less benefit from hormone therapy than the A's. This is why I was particularly interested in having the oncotype. If I'm really a B, I want as much data as possible to be used in deciding AI v tamoxifen for me. If chemo comes into the picture, we'll have TAILORx to guide us. The dilemma would be the slim chance that I don't respond well to hormone therapy and I'm not a candidate for chemo. But we'll cross that bridge when we get there.

    You know what they say, "In God we trust. Everyone else must show data." ;-)

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2019

    April, read the link in my previous post. It provides several definitions of Luminal B.

    And therein lies the problem. There is no single, clear definition of what is Luminal A and what is Luminal B, which is why it's so confusing for patients who fall into Luminal B based on one definition, but who fall into Luminal A based on a different definition.

    As for the benefit of hormone therapy, I have seen several studies that show that ER+/PR- get as much benefit as ER+/PR+. I will have to dig them out and post them here.

  • gb2115
    gb2115 Member Posts: 1,894
    edited August 2019

    I was luminal A with a 1.2 cm grade 2 tumor and a high Ki67--i think it was around 60%. She sent mine out for a Mammaprint saying the research was better than the research behind oncotype and she trusts it more. It definitely changed the trajectory of my treatment, because in the olden days I would have automatically had chemo because of my age at diagnosis and my one positive node. I still don't like the odds of metastatic recurrence, but what you can do?!

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2019

    Here's one article about the effectiveness of endocrine therapy based on hormone status: https://www.cancernetwork.com/oncology-journal/predicting-endocrine-therapy-responsiveness-breast-cancer

    image

    And from the same article, a comparison of the effectiveness of Tamoxifen vs. the AIs based on PR status:

    image

    So while Luminal B might be less responsive to endocrine therapy, the same cannot be said about PR- cancers, which reinforces that not all PR- cancers should automatically be classified as Luminal B, if they don't have any Luminal B characteristics (particularly high Ki-67)

  • april1964
    april1964 Member Posts: 223
    edited August 2019

    thanks Beesie!


  • Beesie
    Beesie Member Posts: 12,240
    edited August 2019

    Another study:

    Relevance of breast cancer hormone receptors and other factors to the efficacy of adjuvant tamoxifen: patient-level meta-analysis of randomised trials

    "Given the ER status, the PR measurement did not seem to be importantly predictive of efficacy. In disease recorded as ER positive there was substantial and highly significant benefit even if the sample was recorded as PR poor. The absolute recurrence reduction at 15 years seemed, if anything, somewhat greater in ER-positive PR-poor disease than in ER-positive PR-positive disease, perhaps because of the somewhat higher background risk of recurrence without treatment. Conversely, in disease reported to be ER poor, positive PR measurements did not identify a subgroup with significant benefit. There did seem to be some slight early benefit from tamoxifen in disease that was measured to be ER poor and PR positive but this finding was not significant, and might be attributable to inclusion in this category of a few patients with false-negative ER assays."

    image

  • happyperidot
    happyperidot Member Posts: 53
    edited August 2019

    Thanks for all the great research, Bessie. Very informative.

    I got my results yesterday. (8th day after the doc ordered test. wow.)

    My RS is 18. And, if I heard her right, 5% risk of recurrence. No apparent benefit from chemo. Tamoxifen, not AI is indicated; which is good cuz that's what I'm on.

    My next appt is on the 21st, so I'll get to see the full report then. So glad this good news validates the clinical conclusions. That's what I was looking for all along. Happy day.

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2019

    That's great news! Now you can feel completely comfortable with the treatment plan. YAY!! to that!

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