BCI Test Shows High Risk - Resume AIs Now that I'm In Year 8?

Options
NatsFan
NatsFan Member Posts: 3,745

I'm meeting with my MO to discuss this, but thought I'd throw it out there to the community for any thoughts on questions I can ask to help guide my decision. I was dx 8 years ago, ER+/PR+/HER- with a single positive node. I had a BMX, did 6*TAC chemo and 5 years of letrozole, which I completed 3 years ago. At the time I stopped the AI, there was nothing either way to show benefits of staying on an AI beyond 5 years for my particular dx, so I stopped after 5. As we probably all know, now there have been some study results. There is also genomic testing available, some available for node positive patients for the first time.

At my annual MO appointment this month, we of course discussed all of this. My MO suggested that she could order the BCI test for me to help decide. My results just came back with a score of 8.8 (out of 10) meaning I have a high risk for distant recurrence in years 5-10. The test also shows that the probabilities are that I would get a benefit from taking an AI. Basically, according to the BCI info, taking an AI reduces my risk of recurrence from 27% to 10.5% in years 5-10. That's a substantial reduction. My MO is now recommending that I resume AIs.

My problem:

1. I'm already into year 8 with no evidence of disease. Had I has these BCI results 3 years ago, I probably would have stayed on the AI this entire time. But I've been off it now for 3 wonderful years. Now that I'm already into year 8, do I still have a 27% risk or is it less since I've made it into year 8 already?

2. I had every s/e in the book on AIs. My QOL was severely diminished while on AIs, and I was never so happy as when my 5 years was up. Most of the s/e are gone by now - my DEXA is back to normal, my lipids are back to normal, my retinal issues are back to normal, and my QOL is so much better now that I'm not tired, cranky, and in joint and muscle pain every minute of every day. The thought of resuming AIs and going through two more years of sheer hell is depressing. But the thought of recurring is even more depressing.

3. There still seems to be some question about the validity of the BCI test, and ASCO apparently still doesn't recommend using it to guide treatment decisions for node-positive cases.

In the end I'm probably going to concur with my MO's recommendation and start taking an AI again. But this is a savvy group here, and I'd love to hear thoughts from others.


Comments

  • rozem
    rozem Member Posts: 1,375
    edited August 2016

    I would start the AI again...I know, sigh

    unfortunately they don't know what "wakes" cancer up so if the BCI test shows benefit (and I understand that this test is not standard of care) then I would go back on...you will have a benefit even after you stop - maybe for a couple more years until they understand more about the BCI and its significance

    your SE may be easier this time around

  • NatsFan
    NatsFan Member Posts: 3,745
    edited August 2016

    Thanks Rozem - I think I just need the encouragement.

    As you said, I'm hoping the s/e may be easier this time around. Last time when I started AIs, I was severely weakened from surgeries and chemo - I started AIs 3 weeks after my last chemo and my entire system was depleted. This time I'm strong and healthy at the start - I'm hoping that might make some difference.

  • Denise-G
    Denise-G Member Posts: 1,777
    edited August 2016

    Sorry to say I agree with Rozem. And maybe, just maybe you won't have the SEs you did earlier. I am on year 4 heading for the rest of my life per my MO on Arimidex.

    My side effects have improved considerably since I am improved in both health and time elapsed.

    Sending my best to you!

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

    nats - I had the BCI test and had a similar score to yours but the drug benefit result for me was low, that puts me into only 10% of people who had that combination. Even though that was the case, and I had the test at 5 years, my MO would like me to stay on as long as I can tolerate Femara. His rationale was that since I did not recur in the first five years with a low drug benefit it is possible that the little I did receive kept me NED. I was also node positive, and I would suggest that you try to go back on and if you have issues try switching manufacturers, and/or drugs. I took a 6 week holiday due to a trigger thumb and yet another recon surgery and I felt great - it was very hard to go back on, but I also feel a bit of a safety blanket. Good luck!

  • LizM
    LizM Member Posts: 963
    edited August 2016

    Nats,

    I agree with the others, I would go back on the AI. If you don't, and you recur, you will have to live with knowing you may have been able to stall or prevent a recurrence if you went back on the the AI. I took Femara for 10 years. If I could stay on longer, I would possibly consider it. I wouldn't be surprised if they find out in the future that we should take these drugs for at least 15 years. I also had one positive node. I could still recur but at least I know that I took the drug for as long as they would allow me to.

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

    NatsFan, what about a compromise? You could discuss with your onc whether tamoxifen is an option for you. The side effects might be better--less joint pain, for example. And benefit for your bones.


  • NatsFan
    NatsFan Member Posts: 3,745
    edited August 2016

    Thanks everyone. I'm comfortable with a certain amount of risk. I'd have opted out if indications were only a 10% benefit, as the health risks from taking AIs (fractures, high lipids, weight gain, etc.) are not insignificant, plus there's the large diminution of QOL.

    The fact that I've been off of it for 3 years with no evidence of disease so far tells me that my recurrence risk in years 5-10 may be something less than 27%, but of course there's no way to tell calculate exactly what that is. All of this will be part of my discussion with my MO, of course.

    At this point, I'm open to going back on, but if my QOL deteriorates badly, I can revisit my decision at any time. Sigh.

  • EJF
    EJF Member Posts: 8
    edited August 2016

    I have been reading about BCI and want to discuss with my MO. Did your insurance cover the cost? I think it is a very difficult decision to make-QOL versus benefit from the meds. I want to know my risk because I am struggling with side effects and I have only been taking Tamoxifen for 2 years. I am now post menopausal and will also discuss switching to an AI at next visit but am afraid the SE's might be even worse! I would like to stop endocrine therapy and want to know if BCI can help with the decision

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

    EJF - BCI is usually done at the 5 year mark as its purpose it to determine whether to stay on anti-hormonals beyond five years. Insurance coverage is pretty spotty at this point, but I am pretty sure insurance would not cover the test prior to the five year point - the cost is approximately $4500. Did you have an Oncotype Dx test done?

  • EJF
    EJF Member Posts: 8
    edited August 2016

    SpecialK-I did not have Oncotype done because when I had surgery in early 2014 it wasn't approved for node positive BC and I had one positive node. I didn't know enough to push for it-I was treated at MSKCC and chemo was recommended because of my one positive node. I regret that I wasn't as informed about it to say I wanted the test anyway. Thanks for BCI info

  • NatsFan
    NatsFan Member Posts: 3,745
    edited September 2016

    EJF - in response to your insurance question - the EOB just popped up on my insurance website today. $5400 cost for the BCI, and my insurance picked up the entire cost.

  • Alirena
    Alirena Member Posts: 82
    edited September 2016

    NatsFan, Like you I have had a chance to look at my report but haven't discussed the results with my oncologist. My report says HIGH Risk of Late Recurrence (8.8% between years 5-10) and HIGH Likelihood of Benefit from extended endocrine therapy.. My BCI score on the chart is 7.0. As far as the numbers 27 and 10.5 I haven't figured out if they pertain to me or come from a study. I also haven't figured out to apply the 16.5% absolute benefit number. My next appointment isn't until the end of the month so I'll have to wait a while to get an explanation from my oncologist. My oncotype score 5 years ago was 16.

  • KathyL624
    KathyL624 Member Posts: 217
    edited September 2016

    How does the BCI test differ from oncotype? The oncotype predicts risk within 10 years after taking tamoxifen for 5 so isn't that basically the same thing as the BCI which predicts risk of recurrence in years 5 through 10

  • Alirena
    Alirena Member Posts: 82
    edited September 2016

    The second page of my report shows additional results applicable if BCI was ordered at time of diagnosis. I'll wait to discuss the results any further until I see my oncologist and am sure I'm understanding what I see. That said, it appears my risk for recurrence between years 0-10 is higher with the BCI than with the oncotype.

  • KathyL624
    KathyL624 Member Posts: 217
    edited September 2016

    I would be interested to see how your doctor interprets that difference. Seems confusing!

  • Alirena
    Alirena Member Posts: 82
    edited September 2016

    I find the whole BCI report confusing. Probably why they didn't want me to have the results before I saw the oncologist. They don't do the math for you. If my interpretation is correct a 16.5% absolute reduction would reduce my risk by 1.45%. Of course I could be wrong and I'll let you know what the oncologist says.

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

    Could you go back on it intermittently? There seems to be some value in taking it for 6-8 months, then breaking for six weeks to relieve symptoms, and then back on. Apparently (I don't have the research at my fingertips but can be found by searching these boards) there seems to be some value in intermittent breaks...which reduce the incidence of becoming resistant to the AI.

    Claire

  • NatsFan
    NatsFan Member Posts: 3,745
    edited September 2016

    Alirena - our BCI results look similar. This is the way I read my results:

    If I were at Year 1, without AIs I'd have a 46% chance of recurrence during Years 1-10 (46 women out of 100 will recur without AIs). That was the info on that second page of the report that gives results if the test has been ordered at diagnosis.

    But I've been taking AIs for 5 years and have not recurred. So the only years left that we're concerned about are Years 5-10. So if I were now at Year 5, my risk of recurrence would be 27% during Years 5-10 if I don't take AIs (27 of 100 women will recur without AIs). If I do take AIS, then I'd reduce that risk of recurrence in Years 5-10 to 10.5% (10.5 of every 100 women will recur with AIs).

    That's a difference of 16.5% in absolute terms from Year 5-10, meaning that 16.5 fewer women out of 100 will recur if they take AIs during Years 5-10.

    In terms of percentage, dropping my chances of recurrence from 27% to 10.5% is roughly a 60% improvement (10.5 is 38% of 27).

    Of course it's entirely possible I missed something, and I'm all wrong. I have an appt with my MO next week to go over all of this - we'll see how close I got. And I think you raise a good question about these numbers - are they personalized or just extrapolated from studies.

    The Onco test was not available for node positive patients 8 years ago, so I never had it.

    Claire - Intermittent is my exact plan if the s/e get too much. My MO is very willing to work with me on that.

  • Alirena
    Alirena Member Posts: 82
    edited September 2016

    NatsFan, You will be seeing your oncologist before I see mine so I'll be waiting to hear what she/he says.

  • NatsFan
    NatsFan Member Posts: 3,745
    edited September 2016

    Had a great discussion with my MO last week about my BCI results. It turns out that I'd interpreted them pretty correctly.

    However, my onc added some info about those recurrence rates. She said that the recurrence rate figures lump in two kinds of recurrence - women who have a new primary in the contralateral breast, and women whose recurrence is a distant mets. Roughly 10% of the recurrences are women who have a new primary in the contralateral breast. Since I had a BMX, the risk of a new primary in the opposite breast is close to zero for me. However, the flip side of that is that should I recur, it will almost certainly be mets.

    The other thing she said was that these figures assume that the test is being done in Year 5, and measure the risk of recurrence in Years 5-10. However, since I've gotten as far as Year 8 with NED, my risk is even lower than it was at Year 5.

    Overall, she said that instead of my current risk being 27% as stated on the BCI report, it's something probably around 10-15% due to the fact that I have no contralateral breast and I'm already in Year 8. And if I go back on AIs, instead of my being able to bring my risk down to 10% as stated on the BIC report, I could probably bring that risk down to around 5%.

    So it appears that while the BCI tests the genomic makeup of the patient's individual tumor, when reporting these risk assessments, the BCI doesn't take into account what surgeries or treatment the patient might have already had, and what year they are in. That's where our MOs come in - they can help us individualize these general risk assessments and apply them to our particular case.

    Bottom line - we agreed that there is some benefit to going back on AIs, and I agreed to give it a try. If the s/e get too bad and alternate measures (vacations, changing from on AI to another, etc.) don't help, then at that point we can make a decision about stopping it again.

  • NatsFan
    NatsFan Member Posts: 3,745
    edited October 2016

    Just a quick update - it's been almost 8 weeks since I resumed AIs after being off of them for 3 years. Knock on wood, so far the s/e are much much much less than they were during my first go round. I had every s/e in the book the first time round and was miserable for those 5 years.

    This time is much better. The most noticeable s/e has have been a marked increase in the number and intensity of hot flashes, and I've also had some mild joint/muscle aches. But compared to last time, the effects are very manageable.

    We'll see how it goes in the coming months, but so far I'm pleasantly surprised how easy it has been this time around.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2016

Categories