MY BS doesnt do Onco test - 1 pos node and straight to chemo!!!

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warriorwannabe
warriorwannabe Member Posts: 66

He says oncotest takes long and is only used for decision making if there is something in a gray area. If I have one pos node (pending SNB 3/23 and BMX 3/30), I get chemo. Period and end of story. Does this sound right to you?

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2016

    I would wait until the node biopsy and then decide on whether oncotype works for you. My oncologist wasn't going to send for the oncotype right away, but when I asked her she agreed that it would be a good idea to have more information. When it came back low risk (15), I decided to skip chemo. If I had more than one node positive or something like LVI, I would have probably chosen to do chemo. You'll have much more information after your surgery, and I would take the advice of an oncologist rather than a surgeon. Best of luck!

  • labelle
    labelle Member Posts: 721
    edited March 2016

    I would want the oncotype test done. Latest studies are showing it to be accurate for women with 1-3 positive nodes. Both breast centers I consulted for treatment told me a low oncotype score trumps one positive node and neither recommended chemo for me despite that positive node and neither center's oncologists would even make a recommendation about chemo one way or another w/o knowing my oncotype score. They rely that heavily upon it. IMO, the more they know about the make-up of your tumor the better and while it used to be a positive node meant chemo automatically, that is not the case today. Try to get a second opinion from another oncologist not affiliated with the first. I don't remember exactly how long it took to get my oncotype test back, but not more than a few weeks. In my case, they used tissue from my core needle biopsy, so I knew the results before I even had surgery, but from reading on here most women don't seem to have it done until after they have surgery using samples from their lumpectomy or mastectomy.

  • Molly50
    Molly50 Member Posts: 3,773
    edited March 2016

    I had an oncotype of 13. Low moderate score. I had two positive nodes, one macro and one micro plus extensive LVI. My MO and my second opinion MO both said no to chemo for me.

  • warriorwannabe
    warriorwannabe Member Posts: 66
    edited March 2016

    WOO HOO! Great info ladies!! Very helpful to me!!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2016

    While the BS has first access to the specimen to order Oncotype Dx testing, it really falls into the purview of the oncologist - as does the systemic treatment decision making - not the surgeon. I would ask for an oncology consult and let that doc order the genetic assay testing

  • warriorwannabe
    warriorwannabe Member Posts: 66
    edited March 2016

    Thanks ladies. I should clarify - I havent met with an MO yet. I had called my BS office to ask them to send my tumor sample from biopsy NOW for onco test. This way, after my SNB and BMX, we have the results for the MO. The BS office mgr said that its only used for decision making if there is something in a gray area. That if I have one pos node, I get chemo.

    I have not had any consultations with MOs yet. Should I be doing that now? All I have is pathology from my tumor, and surgery pending in a few weeks.

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

    If I understand correctly you haven't had surgery yet therefore surgical pathology is not yet available. In this case, it's too soon to conclude how useful oncotype test will be in your treatment planning.

  • warriorwannabe
    warriorwannabe Member Posts: 66
    edited March 2016

    Thats right muska. BMX is 3/30 and SNB is one week prior. I want to know if I should insist on an Onco type test regardless of how many nodes are positive. Im preparing for my next step in this journey, and questions to ask the MOs.

  • labelle
    labelle Member Posts: 721
    edited March 2016

    I met with oncologists prior to having my lumpectomy and it was the oncologist I chose to go with at Vandebilt who ordered the testing of the specimen from my core needle biopsy (done at my local women's center). You do know you have BC and IMO there is no reason to wait until after surgery to start lining up all the members of your treatment team, including an OC you like and are comfortable with.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2016

    You can safely use oncotype for up to 3 nodes I believe. I had a consult with an MO before my surgery and we agreed we would send for oncotype with one or two positive nodes. The sample wasn't sent for testing until about 10 days after my surgery, and it took about 2-3 weeks after that to get results. Besides, you wouldn't want to start any kind of treatment for a month after surgery until you're all healed. Hugs.

  • warriorwannabe
    warriorwannabe Member Posts: 66
    edited March 2016

    You ladies absolutely rock!!! I wish these replies had a LIKE button (as in Facebook)!!!!!


  • Optimist52
    Optimist52 Member Posts: 302
    edited March 2016

    Another point to consider is that ILC doesn't always respond as well to chemo as IDC. especially if not Grade 3.

  • Molly50
    Molly50 Member Posts: 3,773
    edited March 2016

    Your surgeon's nurse is wrong. They do oncotype dx for up to 3 positive nodes. My BS ordered the test but my MO is the one who made the call for no chemo.

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

    You’ve yet to have surgery and SNB, right? Unless you had a pretty good-size tissue sample from your biopsy, it’s highly unusual (though not unheard-of, since labelle had it) to do OncotypeDX before surgery has removed the entire tumor and its margins. Until surgery, they can’t be sure that you have pure ILC, they don’t know for sure your stage--how many positive nodes you have and the actual size of the tumor--and they usually don’t have enough of a sample to send off for Oncotype testing. All these factors will determine whether your cancer is obviously aggressive enough for chemo, obviously non-aggressive and highly unlikely to respond, or in that “gray area” for which OncotypeDX was developed. (Mine, though ER+/PR+/HER2-, no LVI, and staged as IA, would have been a slam-dunk for no chemo, but for its size--1.3cm, nearly twice what the ultrasound indicated--so the BS suggested to the MO that she order the test even before my first MO appointment). It’s not an inexpensive test, and some insurers might balk at paying for it if the tumor doesn’t fall into that “gray area."

  • mmtagirl
    mmtagirl Member Posts: 509
    edited March 2016

    chemo is still the standard of care for 1-3 positive nodes for hormone positive bc. There is a clinical trial you can ask your onco about. I enlisted in the trial and was placed in the chemo arm. Oncotype was 16.

    Everyone's cancer and overall health is different. Hate, hate, hated chemo but I got through it. Find a MO you trust and like and no matter the decision only look forward and don't second guess yourself. Good luck to you

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

    No it doesn't sound right get all the info you can on your tumor and then YOU make your treatment decision.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2016

    I had one positive node and ITC after neoadjuvant treatment. Because my tumor had been treated, tissue from my core biopsy rather than surgery was used for the Oncotype, which was submitted and ordered by my BS. In my case, the probable benefit of chemo would have been quite minimal and we knew (from pathology) that the tumor and nodes had responded very well to Femara. I did get 2 opinions regarding chemo, as well as it being presented to the hospital's tumor board.

    I think it took a total of 10 days from submission to receipt of results of the Oncotype.

    Warriorwannabe, I would take advantage of this time to get some referrals to MOs and interview at least a couple of them. Finding one you are comfortable with is important and you don't want to have to rush a decision.


  • cp418
    cp418 Member Posts: 7,079
    edited March 2016

    This was the standard of care but Oncotype testing has become available to identify patients who would/would not benefit from chemo. The one size fits all for a positive node is old school IMO. I would not allow any doctor to deny me this valuable information even if you still do need chemo.

    http://health.usnews.com/health-news/articles/2016...


  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited March 2016

    It will be your medical oncologist who orders the oncotype (or not) and who determines whether you will have chemo. Breast surgeons give us a general overview of what is to be expected (probability of chemo, for instance), but deal only with surgery and recovery. Typically, the oncologist evaluates your surgical results and determines whether chemo is a slam dunk or not. If it is clear that you will need chemo, oncotype is not called for. Assuming that chemo is not clearly necessary, the oncologist will send a sample of your tumor to be tested. Yes, this takes a while, but chemo would not start until you are healed from your BMX.

    I remember quite clearly how stressful (That's a euphenism for traumatic!), all this hurry up and wait stuff is, but, truly, until your surgery is complete, and the final pathology has been posted, there simply is not enough information for your onc to make a decision about whether an oncotype is appropriate for you. And no, one positive node is no longer a firm criteria for determining the necessity of chemo, but is, of course, one of many factors to be evaluated.

    Yes, it would be a good idea to meet with an onc now. S/he will be somewhat limited by the amount of presurgical information available, but should be able to clarify a number of issues, and you will have one more resource for the questions that are sure to arise.

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

    Hi Warrior, as SpecialK pointed above your post-surgery care falls under the control of medical oncologist. (s)he will need surgical pathology results to assess whether oncotype is useful in making your treatment decisions or not. You will need to discuss with him/her. Insurance will not cover the test if you don't fit prescription requirements. There is one thing I would like to mention here: your MO is much better equipped to make this decision than anybody on this board. You need to trust your oncologist is working in your best interest. If you have questions about these decisions by all means bring them up and listen to what (s)he has to say, get a second opinion if you disagree. And always remember oncotype is just a test that assesses the risks based on currently available genes data and low oncotype is not a guarantee of no-recurrence.

    I very much hope you will fall into the group for which oncotype is prescribed, i.e. up to 1 -3 positive nodes and no other complicating factors. In my case, I went into the operating room expecting to be stage 1 and woke up stage 3. When I asked my MO why she didn't order oncotype I was told I needed chemo no matter oncotype score.

    Good luck with your surgeries!


  • jenjenl
    jenjenl Member Posts: 948
    edited March 2016

    I had a surprise when i had the test done, the test indicated i actually wasn't weakly ER+ but i was TN. So the test changed my chemo. If I would have went with ER+ chemo it may have not been effective.

  • bevin
    bevin Member Posts: 1,902
    edited March 2016

    HI there, the Oncotype dx, is now standard of care even with lymph node positive cancer. You may want to request the doctor order it. Now that its standard of care most insurance cove the cost and if yours doesn't the genomic health folks work with you and I had the remaining balnce waived even with a 6 figure income. They're keen on the testing and will work with you and your insurance as this costs way less than chemo and in 25% (?) of cases changes treatment decisions.

    Good luck to you and what you decide to persue.

  • Artista928
    Artista928 Member Posts: 2,753
    edited March 2016

    I didn't have onco testing and MO doesn't believe tumor markers are accurate. I was 1 node positive and with my size of tumour, 7 cm, I was told if I don't do chemo then it's going to come back. Rads was uncertain until I came back with 1 positive node so now that's on as well.

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

    Hi:

    It sounds like your node status is currently unknown, and you could still be node-negative.

    To expedite matters, you can certainly look for an MO now, and set up an appointment at a time post-surgery when your full surgical pathology and associated test results (ER, PR, HER2 status) will be likely complete, and be made available for review by the MO.

    The test is usually run on surgical samples, as explained here:

    Timing: http://breast-cancer.oncotypedx.com/en-US/Patient-...

    Surgical samples are more likely to be available in sufficient quantity and quality for conducting the test. With respect to quality, samples submitted must be suitably prepared and should be sufficiently "representative." As you can appreciate, the submission of "representative" tissues is best made with full surgical pathology available. For example, the submission form states: "List the most representative specimen (i.e. the highest grade and largest tumor) on line one."

    Since nodal status is a factor for eligibility, axillary staging should typically be completed when eligibility is determined. This is another reason why eligibility is usually determined post-surgery.

    Minimally invasive biopsies are not always representative of what is found post-surgery. Thus, as noted above, ER, PR and HER2 status will again be determined on surgical samples, and this information, together with your nodal status will determine your "formal eligibility" for the test. Here is a link to the professional page with current "formal eligibility":

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

    As with any such test, there may be considerations other than formal eligibility, such as the scope and quality of clinical validation of the test as it pertains to you personally.

    Consensus guidelines are a useful starting point for information gathering. Consensus guidelines treat the Oncotype test quite differently in the node-negative versus node-positive settings. For example, the NCCN guidelines prominently feature the test in node-negative patients (See NCCN guidelines for Breast Cancer, Professional Version, 1.2016, Chart BINV-6, at page 18, available for free with registration at www.nccn.org).

    In contrast, on Chart BINV-6, at page 18, the NCCN guidelines refer to the test in a footnote for node-positive patients, saying it can be "considered" in select patients with 1–3 involved ipsilateral axillary lymph nodes. See also, the discussion section in the paragraph bridging pages MS-24 and MS-25 (under revision).

    In addition, in February, 2016, ASCO issued the following guideline regarding Oncotype for invasive disease and other tests:

    "Use of Biomarkers to Guide Decisions on Adjuvant Systemic Therapy for Women With Early-Stage Invasive Breast Cancer: American Society of Clinical Oncology Clinical Practice Guideline"

    2016 ASCO Guideline Main Page (see "Full Text" at right): http://www.instituteforquality.org/use-biomarkers-...//www.asco.org/guidelines/adjuvantbreastmarkers

    2016 ASCO Guideline Document: http://jco.ascopubs.org/content/early/2016/02/05/JCO.2015.65.2289.full

    Please see Recommendation 1.2 regarding node-positive disease and the Clinical interpretation of literature review and additional remarks in the Data Supplement.

    This guideline includes a discussion of analytical validity, clinical validity and clinical utility, and the criteria for determining these, including an assessment of the quality of the evidence based on the types of studies then available.

    Since the ASCO guideline came out, new evidence from a prospective trial became available for certain node-positive patients, and more may become available. Thus it is critical to seek accurate, current, case-specific expert professional medical advice from a medical oncologist regarding the potential value of the test in your specific case in light of currently available clinical evidence.

    For this or any other test described, patients interested in any test should not hesitate to inquire about the information in the 2016 ASCO guideline and what it means (in light of other relevant guidelines and recent studies), regarding the use of the test in their specific case, appropriate uses of various test outputs, and the scope and quality of validation in patients like them (e.g., node-positive, ILC).

    BarredOwl


    [Edited to add: Because of the above, as of this date, I do not think it would be accurate/complete to say that "the Oncotype dx, is now standard of care even with lymph node positive cancer." Use of the test in the node-positive setting may be within "standard of care" and within NCCN guidelines in the appropriate case, but not using it in the node-positive setting is within both NCCN guidelines and ASCO guidelines.]

    [Edit 3/23/16: Add working link direct to 2016 ASCO Guideline document]

  • marijen
    marijen Member Posts: 3,731
    edited March 2016

    Whoops wrong topic.

  • HomeMom
    HomeMom Member Posts: 1,198
    edited March 2016

    I spoke to a woman recently who was diagnosed 6 months ago with BC. She didn't do chemo or rads even though she told me she had 2 nodes positive. I didn't want to press because we met officially for the first time after her 20 year old daughter died in a hit run with a drunk driver. I'm concerned for her. Since some or most of you know a lot about how they decide who get chemo when it falls in a gray area, I thought I'd ask why that would be the case for her? My BS told me that with IDC that I would at a minimum get rads and chemo if in my nodes. If it's in your nodes it has to be invasive!

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

    Warriorwannabe, I would try to find a place where there is a team approach, such as at a teaching hospital or major cancer center. Or at least get a medical oncologist involved asap. You want to know that the advice and treatment you are getting is up-to-date. Also, you want to know that at surgery the tissue will be properly prepared for submitting for the Oncotype test if appropriate.

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

    Hi HomeMom:

    It may be a reasonable treatment choice for her, and may be within treatment guidelines. All "IDC" is "invasive", whether it is node-positive or node-negative. Node involvement is evidence of loco-regional spread, but there are differing degrees of involvement, with different prognostic significance and implications for treatment.

    There is little information here about her actual diagnosis, co-morbidities, and treatments, so one can only speculate. Perhaps she did not receive radiation because she had a mastectomy?

    Perhaps her tumor was smallish and her nodal involvement was quite limited (e.g., pN1mi Micrometastases (greater than 0.2 mm and/or more than 200 cells, but none greater than 2.0 mm)), for example, Stage IB disease? Depending on the type of cancer and clinico-pathologic features, for pN1mi (≤2 mm axillary node metastasis), chemotherapy is optional in some cases under the NCCN guidelines.

    Perhaps she is hormone receptor-positive, HER2-negative and with 2 positive nodes, was formally eligible for the OncotypeDX test, and got a very low Recurrence Score, such that her MO felt that in her particular case, she could reasonably choose to decline chemotherapy and rely upon endocrine therapy alone. Other favorable prognostic factors, co-morbidities (risk/benefit), or considerations like age > 70 may have affected the decision. Other scenarios are possible.

    I wrote in detail above about how current guidelines treat the use of OncotypeDX in the node-positive setting, but guidelines are a snap-shot in time, and treatments are individualized.

    BarredOwl

  • HomeMom
    HomeMom Member Posts: 1,198
    edited March 2016

    Barred Owl - thank you. That makes quite a bit of sense, especially the no rads. She was ER PR +, not 100% on the HER2. Bit it it was in the nodes, wouldn't they do rads to your arm pit at least?

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

    Hi HomeMom:

    Sometimes patients receive axillary node dissection instead.

    http://meetinglibrary.asco.org/content/109779-132

    BarredOwl

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