Oncotype scoring rant

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swedge35
swedge35 Member Posts: 15

I have a bit of a rant here. I just came from my first visit with a medical oncologist. He went over the bit about taking tamoxifen to stop hormones from feeding cancer and since I'm ER and PR positive and HER negative the medication will help me a lot. He went on to explain that I will have to see someone else about radiation therapy. He also explained the percentages to me and how chemo most likely wouldn't be needed since it would only lower my chance of recurrence by I think 2%, not worth it.

The problem I have is that he never mentioned oncotype scoring to me. I had to ask him about it when he asked me if I had any questions. The way I heard it was the insurance companies didn't want them to suggest this test unless the involved party was willing to do chemo. Something about the costs and if it came back that the score was high, chemo would likely be needed, and they didn't want to pay for the test unless I was willing to do chemo. I had my son with me and he heard it the same way. So, if you're someone who doesn't have a computer and wonderful people like you to talk to and read about and know nothing about oncotype scoring it wouldn't be given as an option. Since I agreed to chemo if the score was high he said he'd have the test done and to go see him again in two weeks for the results. He wouldn't have said anything if I hadn't asked first! Maybe I misunderstood him but I was floored.

I have learned soooo much from reading this forum, I was scared sh--less when I was first diagnosed. I knew practically nothing about breast cancer until I got online and did tons of research. Not everyone has that option, I suppose there are libraries but the internet is so much better. What about the people that don't have computers or smart phones? What if they could be better treated after an oncotype score comes back high and they miss out on treatment they should have had if they knew to ask. I know I'm rambling a bit here but I'm just really upset by this. People can go through recurrences that shouldn't have happened if they had had this testing done. So many people just trust doctors implicitly and do whatever is suggested to them because they think doctors know everything.

Is it just my doctor or is it the insurance companies? I'm already seriously considering another doctor and I only spent 15 minutes with him. Should I come out and ask him if he would have said anything? I need to trust the doctor in order to work with him. If it's because of the insurance companies I guess I can understand but I still feel that he should have said something before I asked.

Comments

  • labelle
    labelle Member Posts: 721
    edited November 2015

    It is odd how different doctors approach this. My OC urged me to get the oncotype testing done so she would know whether or not to recommend chemo as part of my treatment program. She said she wanted to know as much as possible before making any recommendations-I certainly did not need to agree to have chemo if my numbers were high or anything like that. I definitely didn't have to make any guarantees that I would follow the suggestions of this test to get my insurance company to pay for it.

    Generally, I think insurance covers it if the OC orders it because it is more likely to be used to rule out the need for chemo (before the oncotype test almost everyone w BC got chemo-oncotype testing has saved insurance companies money) than to encourage those who might not have gotten chemo to have it. They don't order it for those who will definitely need chemo (large aggressive tumor w several nodes involved). I certainly wanted my OC to have all the info available before she made treatment decisions and I'm not sure why your doctor didn't feel the same way. I'd get a second opinion/see someone else if for no other reason than you don't seem to trust him.

  • swedge35
    swedge35 Member Posts: 15
    edited November 2015

    That's how I felt, I actually thought he may have ordered the test before I went to see him. Boy was I mistaken. He said no only if I asked for it. That's when he told me about the insurance companies. He said that if I wanted it I could have it, that wasn't a problem, it upset me that he didn't offer it. I may be reading more into it than is there but I felt that he should have said something first without me having to ask.

  • labelle
    labelle Member Posts: 721
    edited November 2015

    I think you are right. In this day and age, it seems part of the standard of care package for someone with your stats and insurance companies don't seem to have any qualms about paying for it-unlike the MRI I had to fight for/wait for insurance to approve. What he's telling you doesn't seem right to me. I don't think you should have had to ask for it. Doctors at both breast centers I consulted wanted oncotype testing done for me and did not make treatment recommendations until they saw the results.

  • swedge35
    swedge35 Member Posts: 15
    edited November 2015

    As my husband would say, WTF (wow that's fantastic)!! LOL. Thanks for sharing that with me Labelle, I appreciate it. I have two friends from work that had BC, I'll have to ask them if it was offered to them and see what they have to say.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited November 2015

    Hi swedge:

    For IDC "Tumor >0.5 cm" that is either pN0 or pN1mi (≤2 mm axillary node metastasis), the NCCN guidelines indicate:

    "consider 21-gene RT-PCR assay" (by that they mean OncotypeDX for invasive disease)

    Thus, making the decision based on traditional criteria alone is formally within the guidelines, and guidance is provided for when the test is "not done". But I think the best practice would be to have raised it with you as an option (actively "consider" with you).

    I noticed you have "Stage IB" in your profile. In another thread, you posted tumor size as 6 mm. Your profile is showing 0/2 nodes.

    I was wondering if you are actually Stage IA. Did you have perfectly clear nodes or was there some limited lymph node involvement, such as pN1mi (≤2 mm axillary node metastasis)?

    Considering size only, a 6 mm tumor is a "T1" size tumor, more particularly a "T1b" size (Tumor > 5 mm but ≤ 10 mm in greatest dimension). But that is just the "T" or size component of stage, not the actual stage.

    Node status is incorporated into the stage determination as shown here:

    https://cancerstaging.org/references-tools/quickre...

    As you can see in line 2 of the Table entitled ANATOMIC STAGE/PROGNOSTIC GROUPS at page 1, a "T1" (e.g., 6 mm T1b-size) tumor, that is node negative (N0), and M0 would be Stage IA (T1 N0 M0). I am Stage IA (with a T1a size tumor of 1.5 mm).

    In contrast, from line 4 of the Table, a "T1" tumor (e.g, T1b-size) with micrometastasis in the node (N1mi), and M0 would be Stage IB (T1 N1mi M0).

    I am just another patient, so if you have any question about the above, please seek clarification with your providers.

    BarredOwl

  • swedge35
    swedge35 Member Posts: 15
    edited November 2015

    Yes I am T1b and, of course, stage 1A. It was just explained to me today by the oncologist. My surgeon called me to give me the pathology reports at like 7:30 in the evening and I didn't think to ask him, he threw me off guard. Then when I did see the nurse practitioner to check my incisions I also forgot to ask her. Either way, I will correct that right now.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited November 2015

    Post a reply

    2 hours ago - edited 45 minutes ago by BarredOwl

    Hi swedge:

    For IDC "Tumor >0.5 cm" that is either pN0 or pN1mi (≤2 mm axillary node metastasis), the NCCN guidelines indicate:

    "consider 21-gene RT-PCR assay" (by that they mean OncotypeDX for invasive disease)

    Thus, making the decision based on traditional criteria alone is formally within the guidelines, and guidance is provided for when the test is "not done". But I think the best practice would be to have raised it with you as an option (actively "consider" with you).

    I noticed you have "Stage IB" in your profile. In another thread, you posted tumor size as 6 mm. Your profile is showing 0/2 nodes.

    I was wondering if you are actually Stage IA, since you have perfectly clear nodes. Was there some limited lymph node involvement not in yor profile, such as pN1mi (≤2 mm axillary node metastasis)?

    Considering size only, a 6 mm tumor is a "T1" size tumor, more particularly a "T1b" size (Tumor > 5 mm but ≤ 10 mm in greatest dimension). But that is just the "T" or size component of stage, not the actual stage.

    Node status is incorporated into the stage determination as shown here:

    https://cancerstaging.org/references-tools/quickre...

    As you can see in line 2 of the Table entitled ANATOMIC STAGE/PROGNOSTIC GROUPS at page 1, a "T1" (e.g., 6 mm T1b-size) tumor, that is node negative (N0), and M0 would be Stage IA (T1 N0 M0).

    In contrast, from line 4 of the Table, a "T1" tumor (e.g, T1b-size) with micrometastasis in the node (N1mi), and M0 would be Stage IB (T1 N1mi M0).

    I am just another patient, so if you have any question about the above, please seek clarification with your providers.

    BarredOwl

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited November 2015

    Super!

    BarredOwl

  • jctreehugger
    jctreehugger Member Posts: 31
    edited November 2015

    That is odd that he didn't mention the Oncotype test. My surgeon mentioned it to me before he referred me to the MO. It seems like a standard practice here to run the test, with ER+ and no or minimal node involvement. Hope you have a low score, and it's clear what to do next. My MO did first ask me how I felt about chemo before we discussed the test, I do think some MOs like to feel you out a bit. The test cost about $4600 but what with all the surgery I luckily (?) already met my deductible so I paid 10% of that.
  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2015

    I had the oncodx test and it was high at 34. Chemo was recommended but I chose not to do it. I am Ned for 4 years now.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited November 2015

    My ER+/PR+/HER-2-tumor was t1c (1.3 cm), N0, M0, grade 2, mitotic score of 1. I opted for lumpectomy + radiation. The way my oncologist explained it when I walked in and led off with all the reasons why I didn’t want chemo, was that she was 90% sure I didn’t need chemo. But because my tumor was too big to be a t1a or b, she would order the Oncotype DX test to be sure, and depending on the result lay out the pros & cons of my options. She did not insist I agree to chemo should the score indicate it. As expected, I scored low enough to reinforce her decision (and my desire) to avoid chemo. At my cancer center, for hormone+/HER2- M0 N0 tumors <1cm and Grade 1 or 2, they generally don’t need to order Oncotyping because chemo isn’t indicated. For such tumors >2cm, &/or more than 1+ node or grade 3, they usually don’t order Oncotyping because they’d recommend chemo. They save the test for “gray areas” such as mine. In my case, the test--while pricey--was far cheaper than chemo would have been, and was covered 100% by insurance.

  • Smurfette26
    Smurfette26 Member Posts: 730
    edited November 2015

    My Oncologist did tell me the option was available but it's not yet covered by Medicare, our Pharmaceutical Benefits Scheme here in Australia. That means we would have to have met the total cost of testing, $4,000.


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

    Of course this was four years ago and he may have changed his approach since, but It took an entire hour before my MO mentioned the Oncotype DX. And this was after speaking about chemo. He seemed very relieved that I agreed to the test before a decision was made on chemo.

    I thought it odd to leave this to the end. It had nothing to do with pressure from insurance, so I'm thinking it may be about style or that the MO has given the "talk" so often and for so long that mention of the Oncotype gets put at the end since is is "new" to an older MO.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited November 2015

    Hi ChiSandy:

    Very interesting. It sounds like your cancer center had an internal policy/practice guiding the decision of when to order the test. The possible existence of variations in local practices, such an internal policy/practice is important information for patients wondering why they have not been offered the test.

    Re the specifics, may I ask if the particular policy/practice at your cancer center that you describe above is current as of this date, or if it may have possibly been updated since the publication of certain TailorX trial study results of the "low risk cohort" (all node-negative) on September 28, 2015?

    http://www.nejm.org/doi/full/10.1056/NEJMoa1510764...

    Very generally, at any particular point in time, eligibility for the test as defined by Genomic Health might be broader than what certain consensus guidelines and/or local practices/policies may provide.

    As of this date, for pT1 size, node-negative (N0), hormone-receptor positive, HER2-negative tumors (ductal or lobular), the size or cut-off at which the NCCN guidelines for breast cancer first introduce the option of chemotherapy is Tumor >0.5 cm.

    For these patients, the NCCN panel considers the Oncotype test for invasive disease "an option." This "option" leaves the question of whether to order the test in the hands of the providers/patients.

    It appears that certain places may have internal policies/practices that guide the decision of whether to order the test. These provide interesting "usage characteristics" or information about when certain practitioner groups perceive the value of the test to be greatest and when they think the results have more potential to affect their usual recommendation based on traditional factors (including grade).

    At the same time, such internal policies/policies might be seen by some to conflict with the concept behind the test that the usual factors (for example, age, tumor size, grade) may not be a sharp enough knife.

    This makes me think of some kinds of questions that patients interested in the test may wish to ask:

    (1) Am I formally eligible for the Oncotype DX test for invasive disease?

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

    (2) What do current consensus guidelines provide about the use of the Oncotype DX test for invasive disease in my particular case?

    (3) If the test is optional under the guidelines applicable to me, does this cancer center have any internal policies or standards that guide the decision of when to order the test? If so, what do these provide?

    (4) If the test would not be recommended for me under the guidelines and/or general policy, could the test be of value in decision-making for me personally in light of my particular pathology and presentation?

    Etc.

    I am just another patient, so please independently confirm what current guidelines provide with your MO.

    BarredOwl

  • ksusan
    ksusan Member Posts: 4,505
    edited November 2015

    None of my many docs mentioned it.

  • Molly50
    Molly50 Member Posts: 3,773
    edited November 2015

    I think in my case, the decision was driven by the early results of the TailorRX study. I was told initially Lx, rads and AI. Then when I had two positive nodes and extensive LVI I was told MX, chemo, rads and AI. Then my surgeon ordered the Oncotype DX and my result was on the low side of moderate risk (13) so then my TX plan changed to MX, rads and AI. I was told chemo would only improve my recurrence risk by 3-5%.

  • bevin
    bevin Member Posts: 1,902
    edited November 2015

    Onco type dx is now the standard of care, Insurance will pay for the test and I'd personally have your Onco run it for you. You do need to know the score and benefit of chemo for you in order to make a proper and informed decision. good luck and keep us posted.

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2015

    I brought up the Oncotype testing to my MO. With my Dx it seemed unlikely that I would need chemo, yet (if you read thru' some of these BCO threads) there are those with surprise high scores from time to time. I just wanted to rule out any surprises.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited November 2015

    TailoRx came out just after my surgery but before my first MO consult. I first mentioned OncotypeDX to my BS’ nurse before that, during my pre-op “patient education session.” She explained that at N.Shore Kellogg, for stage IA t1a-size tumors with all my other hallmarks (and certainly, those of Grade 1), they don’t bother to order the test unless the patient insists, because chemo would not be recommended and insurance would be unlikely to pay. For tumors over 2cm (IIA) with all my other hallmarks, they’re likely to recommend chemo, so they’d expect the DX score to reflect a higher likelihood of recurrence and chemo efficacy but would order it if the patient wanted, and insurance would probably pay. For tumors such as mine, a tumor size between 1-1.5 cm (t1c but still Stage IA, or for those 1.5-2cm, a Stage IB) is considered a “gray area” despite other indications of non-aggressiveness--so the OncotypeDX is usually recommended by the MO to confirm or refute her decision to recommend or discourage chemo. My MO told me she was 90% certain she wouldn’t recommend chemo but because my tumor size was 1.3 cm (t1c) it was prudent to order the test--and my insurance covered it 100%. Even though TailoRx’ preliminary data (the study has not yet concluded) addressed postmenopausal women with scores<10, Genomic Health’s own website lists “Low Risk” as “0-17” and 18-30 as “Intermediate.” They’re still gathering data on women with scores between 11-17, since we would still be less likely to elect chemo than those in the intermediate range.

  • jwilco
    jwilco Member Posts: 486
    edited November 2015

    My original Onc didn't even bring it up. I learned about it on this site. I had to ask and am glad I did because it really helped me make my decision. Of course he agreed that it was low enough to not do chemo. But he was all ready to get me started before I brought up the test!

    Needless to say he is no longer my Onc. I switched about a year into this mess and have been very happy and secure about BC treatment decisions.


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