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Breast Cancer Index - Mixed Results

sl43sl43
sl43sl43 Member Posts: 10

Hello all -

Wondering if any of you can share any of your experiences regarding your BCI and what your oncologists have advised based on your results.

I am nearing my 5 year mark next year for endocrine therapy and recently found out that my oncologist had run the Breast Cancer Index test on my original tumor. I am concerned about the results - it was indicated that I was Intermediate Risk for distant recurrence in years 5-10 but that extended endocrine therapy would be of no benefit. Does this mean I have to do nothing and just cross my fingers that it doesn't return? It seems impossible that there is no protocol for people who are at elevated risk who won't benefit from further treatment. I am also a bit frustrated bc I haven't been able to see my oncologist face to face to have this discussion with him (he sends in his nurse practitioner these days to meet with me), so any information would be appreciated. This is giving me a lot of anxiety. 🙏

If it's of any consequence, I was Stage 1B with no node involvement and an Oncotype Score of 3.

Comments

  • maggie15
    maggie15 Member Posts: 766
    edited December 2023

    Hi @sl43sl43 , As far as I can understand the BCI measures two genomic markers, an endocrine response marker (H/I) and a proliferation biomarker (MGI.) Your tumor could be high or low on either marker which means that some people (like you) can be at an increased risk for distant recurrence (high MGI) but will not benefit from further treatment (low H/I.) Also, the BCI does not always agree with the CTS5 calculator released in 2018 which uses tumor size, grade, node status and age (but no tumor biology) to predict the value of extended endocrine therapy. Like any other test or calculator the BCI can only provide general information to help you make a decision. For example, my Oncotype was 24, 2 points away from chemo being recommended, but my MO was comfortable with me going either way since it was a borderline score.

    You should ask your MO for their input on this. You can send a query via your patient portal prefaced by, "At my last appointment the NP could not answer this question I had." That way the doctor knows this is not a request for new medical advice. I have had doctors answer via the portal, telephone me to have a discussion, or schedule a visit with them as a continuation of the original appointment (no charge.) While allied health professionals can be very helpful they are not MDs.

    There are other things including a healthy diet and regular exercise that can help decrease the risk of recurrence. Also, you might feel that a very small benefit from continuing ET outweighs the risk of bone loss or other side effects. Good luck with your decision.

    https://www.futuremedicine.com/doi/10.2217/bmt-2019-0001

    https://cts5-calculator.com/

  • ctmbsikia
    ctmbsikia Member Posts: 749

    Great info maggie.

    I did not have the BCI test done. I did tell my MO that I scored a 12.4% on the CTS5 calculator and that was enough for him to agree that I continue taking the AI. I just had a DEXA and my hip is improved but my spine score was in OS range. Lower than prior. Not sure what he will say at my next visit and if the Prolia shot will be an insurance issue next year. Should I need to stop, I will.

    My oncotype was 17 but keep in mind that is only a reoccurrence score for the first 5 years.

    Good luck with your decision.

  • sl43sl43
    sl43sl43 Member Posts: 10

    Thank you for the input ladies. I'm in an unusual position because my risk is elevated yet not enough to benefit much from any treatment - and my oncologist refuses to communicate with me (even through patient portal). I've been doing all the research myself online…

    If I could go by Oncotype and CTS5 alone, I would be much relieved as I score low risk on those, just not the BCI and they say that test is more accurate…

    Yes, I have started taking my fitness and diet more seriously now - I'll do all within my means.

  • specialk
    specialk Member Posts: 9,211

    I had the BCI testing done in my 5th year after starting aromatase inhibitors. My result was high risk of recurrence with low benefit of continuing anti-hormonal therapy. I had a 2.6cm tumor, with positive nodes, and was also Her2+. My understanding is that about 10% of those who use BCI for continuing therapy information have this undesired result. My MO asked that I continue with letrozole as long as I was tolerating it. I did have bone density impact, and started Prolia 6 months after initiating anti-hormonals. I was an exceptional responder and regained density taking me from the brink of osteoporosis back to normal density. I asked my MO about whether I had received benefit from the first 5 years of aromatase inhibitors, since no switch was magically flipped at 5 years and 1 day. Other than not having had a recurrence - which could have just been luck - there is no way to quantify this. I asked for, and received, a PET scan so that I could see current status, and my MO felt this was a reasonable way to proceed. I did end up staying on both letrozole and Prolia for another 2.5 years. I have seen conflicting info on whether low benefit is no benefit, but since I was doing ok, I stayed on the meds. I stopped at 7.5 years total because I required a jaw surgery and my maxillofacial surgeon wanted me off both meds before proceeding due to the bone impact. This surgery was completely independent of any breast cancer treatment issues, was simply an old root canal/crown situation that now needed an implant. I am now at 12.5 years since starting anti-hormonals, so I am out of the 5-10 years after diagnosis period. I think continuing or discontinuing is a roll of the dice in light of your test results, but you have to make a decision that lets you sleep at night. It is hard to know what that is - like many treatment decisions. Wishing you the best.

  • sl43sl43
    sl43sl43 Member Posts: 10

    @specialk I'm glad to hear you are doing well, and thank you for sharing your experience. Yes, I too wondered if taking endocrine therapy even mattered these past few years if my biology was indicated to not be responsive to that protocol. I am guessing my oncologist decided better to take whatever modest benefit it might have possibly offered. Moving forward, I am happy to stay on Tamoxifen or switch to Lupron + AI, though it is upsetting to know there is no statistically significant benefit. Hoping very much they come up with something for our 10% in the near future.

  • whatjusthappened
    whatjusthappened Member Posts: 178

    Hello everyone it's been quite a while since I've been on this site. I'm coming upon the 5 year mark and just had a check up where I asked my MO about whether we would be doing the BCI test. He basically said that since I had a BMX, only 1 node positive for micromets, and a low oncotype score (13), there is no indication for me to stay on hormone blockers. Yet my oncotype report said my risk of recurrence was 13% (the score was 13, and the risk was also 13). My risk on the CTS5 calculator was high at 10.8%. I really like my MO, but I kind of feel like he blew me off when I asked this question. I don't know if I should force the issue. What can the BCI test tell me that the oncotype didn't?

  • sl43sl43
    sl43sl43 Member Posts: 10

    @whatjusthappened

    Hi - I'm no doctor but I'm the OP and have studied this topic again and again to get answers for myself. The BCI analyzes the genes of your tumor differently from the Oncotype test and can tell you a possibly different risk analysis for recurrence in years 5-10 AND it can tell you if extending hormone therapy for an additional 5 years will help you cut that risk. The Oncotype is an older test that does a different gene examination and assesses benefit for chemo, not hormone therapy. No shade on your doctor, but if you feel blown off, go with your gut and push for the test (or see a different oncologist for a 2nd opinion) - one thing that I am a huge proponent of, is being your own best advocate. There is absolutely no harm in pushing for the test - what's there to lose?