BCI (Breast Cancer Index) test precondition?

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TimeForCure
TimeForCure Member Posts: 20

I am at the 5 year mark with my anastrozole daily taking. My MO is suggesting I take the BCI test to see if further use will be helpful or not, BUT he says he will ONLY let me take the test if I agree beforehand to what the results dictate. So if it says I will not benefit from further use I will have to stop taking it and he won't prescribe it anymore. If it say I will benefit then he's will prescribe. He says the test is very expensive and he doesn't want to waste insurance co. $. DID YOUR DR ALSO MAKE YOU PROMISE TO ABIDE BY THE TEST RESULTS?? What if I change my mind? I will be stuck without a med. I think dr should be concerned about me, the patient, not the insurance co., they are in business to insure.

When I started he said it's a 10yr deal. He also told me there are no major side effects, (which I knew was wrong) now he says b/c of side effects I should consider stopping, if the test says so.

Would appreciate your comments!

God bless and thank you so much!

Comments

  • Moon46
    Moon46 Member Posts: 1
    edited September 2021

    I just got my result and found your post. I wasn't told I'd have to adhere to it but I can tell by the doctor's message that she considers it a done deal that I quit. She said I have a 7% chance of distant recurrence in the next 5 years which to me sounds high enough to stay on them at first reflection but I'll have to learn more. I'll post if I find out more.

  • Reckless
    Reckless Member Posts: 112
    edited September 2021

    My situation was the opposite. I insisted on theBCI test, my onc was sceptical as she did not have much experience with it and considered it relatively new with limited history. She certainly gave no preconditions to me taking the test. My results are low risk, low benefit, but my doctor and I decided to continue to 7 years, bone density permitting. It will be 2 years of tamoxifen + 5 years of anastrozole ( completed 3 years so far). She says that she prefers her patients to take anastrozole longer if they tolerate ok. But at the last visit I got an impression that she is becoming more accepting of BCI and would be ok with me stopping. My 5-year risk of distant recurrence is 4.9%.I'll see what my Dexa scan shows in October.

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited September 2021

    Timeforcure, your Dr. sounds like a jerk. It should be your choice what to do with your results. You don't have your diagnosis listed, but if you are node positive, 10 years is recommended. If not, most results come back at no need to go beyond 5 years. I fell into the 5% of people who are high risk, high benefit, so I am on my 6th year. But believe me, if I could I would stop right now. I have taken a few 2-4 week breaks after the 5 year mark and I felt so much better off the drug. Either way, the BCI should be one part of your decision whether or not to continue, not all of it. (I should also add that I had micromets in 1 lymph node, but at the time my brand new oncologist ordered the BCI we thought they were ITC, isolated tumor cells. Not a big difference but micromets are considered node positive while ITC are not. He must not have known that you are supposed to do the BCI 5 years later because he ordered mine right after diagnosis.)

  • Salamandra
    Salamandra Member Posts: 1,444
    edited September 2021

    Some doctors take the approach that if a test isn't going to be actionable - if nothing is going to be impacted by the results - that it is not appropriate to do it. I'm not sure if I would *always* agree with that for myself, but I can see the sense of it. For me personally, I am thinking about not taking the BCI when my time comes (if my side effects are as bearable as they currently are) precisely because I think would like to stay on the drugs if I can for as along as I safely can, even if I got a 'low benefit' result, and the test results might just muddy the decision for me.

    BUT the concern about the health insurance's money is just bizarre to me. If that's sincere, then it's not someone I want making health decisions for/with me. If that's a cover for his frustration with patients asking for tests and not listening to them/his advice about them, he needs to get transparent and communicate with you specifically. If you feel like the BCI test is an important enough PART of your decision to want to know the outcome but that it should be information but not decisive, that seems totally reasonable to me. If he disagrees, he should be able to make his case to you and you decide whether you have confidence in him. But in your shoes... I don't know, I would be looking for a new doctor if I didn't feel like I could have a good conversation with him about this.

    I haven't always seen eye to eye with my oncologist, but she's always been willing to have frank conversations with me, to inform me with transparency and openness, and to ultimately work with my decisions even when she would have chosen differently in my place. That's why I keep seeing her.

  • TimeForCure
    TimeForCure Member Posts: 20
    edited September 2021

    I was node negative.

    He recommended the BCI test to me b/c he says it might come back low risk, low benefit b/c the tumor was mucinous. I told him I'd be interested in the test but not sure if I could give up med at this time. So he said he won't order the test unless I commit to the results. So at this time I am on additional 2.5 yrs unless I decide to take the test and commit. He did that to me at the beginning when I had to decide if I want to do chemo. I said no chemo, so he wouldn't let me do the ONCO test, which would give me some useful % etc. I am considering leaving him.

    Thanks for responding!

  • TimeForCure
    TimeForCure Member Posts: 20
    edited September 2021

    I was told at the time that after lumpectomy and radiation and anastrozole my % of recurrence were about 3-4%.(who knows if they told me the real truth?) So 7% does seem high to me. But I don't know if you had radiation. It would make me think twice before stopping the med. It's like a crutch now, if it ain't broke don't fix it I'm thinking.

  • jhl
    jhl Member Posts: 333
    edited September 2021

    Time,

    You should not have to suffer from outcomes based on information you don't yet have. Your oncologist should be a guide, someone who can present what his best professional opinion on whatever interventions the two of you agree on. You do not, as you describe it, have a collaborative therapeutic relationship. I would strongly advise you to consider another opinion.

    Stay well,

    Jane

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2021

    You should not have to go through the stress of making decisions about two possible outcomes when you don't even know which outcome is the reality. In my opinion, this doctor's power trip and ultimatum attitude is messed up. If he was a boyfriend you would leave him, right? Well...

  • TimeForCure
    TimeForCure Member Posts: 20
    edited September 2021

    FYI for anyone. After reading it I still have my doubts about the test itself.

    https://clincancerres.aacrjournals.org/content/27/...

    "Breast Cancer Index Predicts Extended Endocrine Benefit to Individualize Selection of Patients with HR+ Early-stage Breast Cancer for 10 Years of Endocrine Therapy."

    "Recently completed studies have concluded that 7 to 7.5 years endocrine therapy in total may be sufficient for many HR+ patients (4, 12, 13). However, a critical finding of this study is that BCI (H/I) identified approximately 50% of postmenopausal patients that derived a significant benefit from completing 10 years of endocrine therapy (5 years of extended AI therapy) versus stopping at 7.5 years (2.5 years of extended letrozole). The clinical implications of these results are that there is a substantial number of women who may derive additional benefit from longer durations of endocrine treatment based on BCI (H/I) status, and that BCI could serve a critical role in the identification of patients who are likely to experience a significant reduction in risk and improved outcomes from prolonging AI treatment to 10 years."

  • TimeForCure
    TimeForCure Member Posts: 20
    edited September 2021

    https://breastcancerindex.com/explore-the-report-p...

    Further... "This test was developed and its performance characteristics determined by Biotheranostics, Inc. lt has not been cleared or approved by the U.S. Food and Drug Administration. This test is used for clinical purposes, and should not be regarded as experimental or investigational. How this information is used to guide patient care is the responsibility of the treating provider. Biotheranostics is certified under the Clinical Laboratory lmprovement Amendments of 1988 to perform high complexity clinical laboratory testing."

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