Breast Cancer Index or Prosigna Assay?
I have been reading about the Breast Cancer Index and Prosigna Assay. I am approaching the 5 year mark of Femara. My doctors do not offer these tests but I am setting out to find one who will order one or the other for me. Before I start that search, I would love info and advice on which one to pursue. Thanks!
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I don’t know anything about the Prosigna Assay, but I had the BCI. You might want to check out the BCI threads. I think there are a couple.
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I only know about the BCI from the threads on it since my doctors haven't mentioned it. I just wanted to ask directly about the two testing options.
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My MO ordered the BCI after I had done 5 years of Tamoxifen and 3 of Femara. Because Femara was zapping my bones so much (I shrunk 2") and because of lab tests I had to go on Prolia. After the BCI came back she decided to take me off Femara early and it would only help reduce recurrence for me by 7%. Because of the SE of meds she said not worth it for that. Talk to your MO office to see if you can get them to order it.
I know they called me on the phone to review it all with me and said if insurance did not cover it they could waive all but a small amount I would end up paying. Mine was covered by insurance though.
Best of luck to you.
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I just called the BCI company, Biotheranostics, and they were extremely nice and helpful. Anyone with an NPI number (national provider identification) can order the test, so that includes PCP, even chiropractor. They are emailing me the requisition form to give to whomever I find to order the test.
I already had osteoporosis before treatment and for the first two years on Femara, lost another 5%, then then last two years, 2%. I have trouble with all the meds for osteoporosis. I was ready to try Tymlos but had an ambulance ride with afib and very fast heartbeat so holding off. It would be better to do that before Reclast.
My oncologist wants to take me off at 5 years but I want to know whether two more years would help. I have read that 7 is good as 10. The idea of 3 months off, 9 months on, with the final year a full 12 months is also interesting.
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The oncologist (second opinion) who ordered the BCI for me also said I could go off Femara at 5 years, take two years off to improve bones, then do the other two years of Femara then. I have heard of 9 months on, 3 months off, but noone had suggested taking the additional years of Femara at a later time so just sharing that with the forum.
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Very interesting windingshores. My onc would not order the test either. I quit at five years out. Now I don’t want to know what the results might be.
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I hadn't really anticipated going through the anticipation and fear all over again! Trying not to think about it. If the BCI comes back with high risk, knowing me, I will get someone to order the Prosigna Assay and go through more waiting. Honestly I find that there is some kind of subtle psychology here as a survivor. I don't think consciously about cancer much (except at this 5 year point) but it kind of affects my planning without me realizing it until recently. I had to face the fact that underneath my everyday life a lingering feeling remains that I won't be around long term. I would like to either deal with that or let it go!
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I am interested to hear about your results. My BCI came back high risk of late recurrence, but also high benefit of continuing the AI. I am coming up on 5 years in June, and will need to stay on them for at least 2 years more. I can’t wait to be off them, but am scared to stop. I would love to know if other people have been told about the 9 months on, 3 months off idea. Let us know when you get your score.
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I know how you feel! I'll let you know.
Along with the 9/3month regimen, I was also interested in the two year vacation for bone building followed by whatever length of time my doc wants, 2-5 years.
My doc emphasized these meds are not treatment but prevention.
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I can’t imagine taking 2 years off. It would be really difficult to go back on them if you were feeling good again.
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In my case my MO preferred the EndoPredict since the way results are reported is my relevant to my particular situation. It also apparently was validated using more node+ women than the BCI. My insurer refused to authorize it but the company waived any payment from me; they may have persued it with the insurer but assured me that I would not be charged for it one way or another.
Mine came back as high risk (not a surprise) so my MO wants me to try for another five years. However, he approved a 3-month break when I hit five years in October (yay me) and we discussed either switching to tamoxifen or staying on an AI and did opine that 3 months off, 9 on, seemed to be a reasonable and fairly safe approach, at least with an AI. There are studies out there on the 9/3 approach that seem to confirm its safety AFTER the five year mark.
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This summer, I will be at 5 years. If there are convincing studies, I would live to take a break. If you have links, could you please share them? TIA
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PL, I don't have links re: taking a break at five years. I'll look up links to the 9/3 approach.
Does anyone else have anything? I will admit that after five years of religious adherence to femara, I’m enjoying the break and find the thought of another five years difficult to accept.
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I don't have a link for the specific types of breaks discussed here. Though I have been reading a lot of studies at this decision point
Apparently Mass General is doing the 9 months on, 3 months off. Beth Israel told me about the two year break.
I have found there are short term effects to estrogen deprivation (hot flashes, joint pain) but longer term effects over these last two years (thin skin, fatigue, depression or at least low energy, feeling old etc.). To me, that makes sense- short term symptoms from a sudden stop in estrogen and then more subtle ones over the years that follow.
So I would feel good about two years off and then maybe only having hot flashes and joint pain for the second two years.
Only problem with that is that my bone density plunged the first two years, then settled down these last two years.
@Hopeful8201 I am curious what the EndoPredict is preferred for....
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So the EndoPredict looks like a good (second generation test) as well. Now I wonder whether the Breast Cancer Index, Prosigna Assay or Endopredict is the way to go. The plot thickens! I am going to ask my insurance how many tests they will cover!
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Yes, winding, it would be nice to know which of these tests is the most reliable. I go to my oncologist next month for a 6 month check up and I will ask her about my BCI score. She is a new onc for me and did not order the BCI, but I would like to know her opinion. I know she wants me to get a DEXA scan even though it hasn’t been 2 years since my last one. My pcp wouldn’t order one for me when I asked after a year. I feel like most PCPs do not know much about cancer survivors (at least where I live). It is almost like it should be a specialty with so many survivors now.
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Peregrinelady, I have also thought that PCPs specializing in survivors care would be a great addition to the subspecialties. I’m lucky that my pcp is actively pursuing advanced education in breast cancer but I’m sure that’s pretty rare.
Windingshore, my MO generally uses the BCI but in my case felt the EndoPredict would be more useful. For one thing he feels it’s more strongly validated in node+ cases. In addition, it breaks out stats by those who are recurrence free without chemo and on AIs after five years - which would be me. It also provides risk figures out to 15 years. It might not be the best choice for everyone but it did fit my needs, other than not showing the likelihood of benefiting from 5 additional years of AIs, which the BCI does. Since I had neoadjuvant trearwith femara, we already knew that the tumor responded strongly to femara; although the question of whether any residual cells have developed resistance is one that none of these tests will answer.
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I have been reading a lot of studies, some of them on this site, and there seems to be little correlation between the various tests.
I am going to try to also get the Prosigna Assay.
I have always had a feeling that my low Oncotype is from a high estrogen score..... but also that maybe it was high risk but chemo wouldn't work well. Low Oncotypes certainly may sometimes have high risk on the Prosigna.
I am not obsessing or upset. I am going to think about this for a few weeks at my 5 year mark and then not think about it.
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I got my Breast Cancer Index results today. It said 5.7% risk of recurrence in the years 5-10, And also that continued hormonal meds will not benefit me (their website says only 5% of us actually benefit). So in a few months I will stop Femara.
The oncology nurse was impressed by this test. She said their department had not used it and that after seeing the results, she as going to look into using it with other patients. This made me feel good.
Again, I got the paperwork from Biotheranostics, filled out some of it, gave it to the oncologist and also checked with pathology on the availability of the block I wanted (not really necessary).
It is covered by Medicare and they also offer financial assistance if income is low.
I was scared to do this but honestly feel like I have a new lease on life. Now I have to focus on my bones!
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Windingshores - I am thinking about asking for the BCI - can you tell me why you said "the availability of the block I wanted (not really necessary))? To run the test, do they need specimen of the actual tumor?
Thanks
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Yes they need a specimen of the original tumor.
My tumor was heterogeneous, mixed ductal and lobular, some areas higher in HER2 than others etc.
The blocks that were most useful for testing were C2-4, and most of the testing was done on C2.
Genomic Health, makers of the Oncotype Dx, told me it doesn't make any difference, that the genomic information would be the same regardless of which block was used.
That is why I said it may be superstition but I wanted my BCI done on the same block as my pathology and Oncotype for consistency.
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The Breast Cancer Index reports results between 0 and 10, with 5 being the cut off between low and high risk. It does not give percentage of risk.So if the doctor's office told me my risk is 5.7%, perhaps they meant my score is 5.7%, which is actually in the high risk category. Hmmm.
The usefulness of estrogen therapy for years 5-10 is apparently still low.
I'm going to check on this tomorrow. They have mailed my test to me but I can't wait so I'll call the office.
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Winding, my results from BCI did give me my percentage of risk. My score was 9 (ugh) and my chance of late recurrence is 29% without continuing antihormonals and 9% if I do. Fortunately, I am one of the few who I have seen on this board that will benefit from continuing therapy. There is also the possibility of high risk but little benefit. I suspect that maybe you are correct in thinking your score is 5.7. Please let us know what you find out.
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I haven't seen the report yet. The oncology office said my risk was 5.7% and I can see that the report does give a percentage of risk. I am confused by your post because I thought the score and percentage were the same numerical value! So your score of 9 does not mean a 9% risk, in other words, but 29%. I am so glad you get such a substantial reduction from the meds. It is hard to continue on them so hoping your side effects aren't too bad.
I think I may be intermediate risk rather than low, but the report also says no benefit from continuing on meds.
Apparently some people with high risk don't benefit, and some people with low risk do benefit. It is hard to understand how, with a very high ER/PR score initially, I would not benefit (I am going to ask Biotheranostics to explain this to me) but honestly that part of the report is a plus for me, since I suspect Femara is behind some recent health issues and my bones are a mess. It is weird thought to move forward with no protection. I hadn't realized that Femara was kind of a security blanket, as much as I hate it.
I'll let you know. I should get my report in a few more days. I am considering doing the Prosigna too!!!! Insurance wasn't involved in my BCI, nor was my regular oncologist, so I may be able request that one too...it would be interesting to compare Oncotype, BCI and Prosigna : I keep reading they don't agree.
There is no real certainty for any of us so not chasing after that, but still, I find these helpful psychologically. I read that "decision anxiety" goes down after the BCI!
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As you can see from above, I dug out my report. I don’t know if there is an overall score as in Oncotype, unless it is the 9.1%. My Oncotype was 12, so I was very upset to see the high recurrence result from this test. I have had some side effects from the Arimidex and just took a 2 week break due to high blood pressure issues (2 trips to the ER). I am now on 3 different meds just for blood pressure and while it was a pre-existing condition, I believe the Arimidex exacerbated it because when I resumed after the 2 week break, it spiked again. However, I will continue since I am scared of recurrence if I do not.
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I should also mention that I did have micromets in one node, so I am not sure if that is why I have the high score. In small print it does say that this test is only for node negative patients and that LN+ patients should be considered at high risk of recurrence. I was also 100% ER+, so it makes sense that I would benefit from continued therapy.
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Omg, I just looked closer at this report and noticed there is a score on the graph . (7.1)
I hadn’t really looked before because I was so upset about the high risk. Well, 7/10 sounds better than 9/10 anyhow, even thought the percentages are the same. Silver linings, lol. So, if I am reading this correctly, Windingshores, your % looks to be about 10% with a 5.7 score.
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Okay, sorry I keep posting, but after reading through your posts again, I am thinking that if your risk is 5.7%, your score is probably under 5, which is considered low risk. I, too, would be interested in another test for comparison, but not sure if I want to push it with my oncologist. She would probably just say to continue on the Arimidex.
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I am pretty sure, but not certain, that the doc's office said I was low risk at 5.7%. I guess I'll find out.
Thank you so much for all your posts.
I don't quite understand the 27 and 10.5 at the bottom of the page when your risk at the top is 9.1%.....maybe I need to see a whole test report....or you can clarify.
I had grade 3 or grade 2 (varies with lab), highish ki67%, LVI (focal) and a mysterious Oncotype of 8 with 6% risk on meds. At one point I was positive for HER2, then equivocal, then negative and my second opinion doc retested with more cells and got a negative. Mixed lobular and ductal. Overall, I was surprised by the Oncotype but didn't really trust it, so it will be so helpful if a second test puts me at low risk.
I am so sorry you have to continue on meds. I am going to ask them why a person with 90+% ER positivity and 80% PR could conceivably not benefit from continued meds. I am wondering if it has to do with relative risk of other medical problems affecting survival.
I hear you about the blood pressure. I feel sure my atrial fibrillation is related to Femara, and my hip is now at -3.9 on the DEXA. I have had osteoporosis for 12 years and no new fractures as yet, but I am noticing that I am able to lift less and less without pain.
I really appreciate your sharing your report. It will help me have a good night to tell you the truth.
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