When I was first diagnosed with breast cancer and discussing chemotherapy with my first oncologist (yeah, I’ve had five, but who’s counting?), we talked about the Oncotype DX® Test. This test helps determine risk for distant recurrence in some early-stage, estrogen-positive breast cancers. It is used to help decide if a patient will benefit from chemotherapy or if hormone therapy will likely be enough. I wanted this test. However, my oncologist didn’t order it because it’s more commonly used for node negative cancers. I was not node negative. He said no matter what my number would be, he’d still be recommending chemo due to my unclear lymph nodes.
Still, I wanted to know my number. I was curious. In my mind, knowing my score would solidify my decision to go ahead with chemotherapy. Somehow if I knew my score was high, chemo would sound more doable, if that makes sense.
But of course, this wasn’t/isn’t how things work. The test was expensive and I didn’t push. (I probably would now). I still wish I knew my score. But… I do not.
Fast forward five years.
As I mentioned in a previous post, I have completed five years on my “chosen” AI. Recently, I had to make a decision about continuing or not.
And there was another test I wanted, the Breast Cancer Index Test (BCI).
At my last oncology appointment a few months ago, I brought this test up with my oncologist. He didn’t know about it, but said he would research it for me and get back to me. I said I’d do the same.
This test is intended to help guide early stage, ER+ breast cancer patients in making the decision to continue or not with anti-hormonal therapy. Just like with the Oncotype DX test, your tumor is analyzed resulting in a score that helps determine if you are likely to benefit from five additional years of anti-hormonal therapy or not. Of course, there are no guarantees. This is just one more piece to the puzzle.
And it’s an important piece because while estrogen-positive breast cancers are not as likely to recur during the first five years as some more-aggressive-at-diagnosis cancers are, statistically, recurrence rates for ER+ cancers “catch up” with other types of cancers. In other words, the risk doesn’t disappear, not even many years down the road.
Of course, most of us know this, but having another tool that helps ascertain an individual’s risk based on her tumor’s biology, can help a patient decide what to do going forward after completing that first five years of anti-estrogen therapy.
So…
My oncologist said yes, he would happily order this test for me. But surprise, surprise, this test is costly too. And only one company runs it, BioTheranostics, located in San Diego, CA. This, of course, was considered out of network by my insurance provider – way out.
After a lengthy phone consult with a rep from BioTheranostics who informed me of the cost ($5,400) and a rep from my insurance company, it was determined it could possibly be given in-network status if I was willing to jump through some hoops. And if my oncologist ordered it, of course.
I was willing. But due to timing issues and deductible issues, the cost was still too high. And yes, there are payment plans as explained to me by that rep, but payment plans don’t make the cost any less.
(Let’s just say when I got off the phone that day, I wasn’t happy and did a fair amount of cussing and crying).
To make a long story short, or at least shorter, I plan to revisit this at my next oncology appointment and get the ball rolling. Dear hubby and I are shuffling and planning and saving as we try to get this figured out before year’s end this time.
Regardless, my oncologist is recommending I continue on an AI. But just like that other time, knowing my score would solidify my decision to continue if it turned out to be high. If my score would turn out to be low, I wouldn’t necessarily stop taking an AI, but I might consider stopping before another five years go by depending on how my side effects are impacting my quality of life. It’s that whole knowledge is power concept again.
I hate it when things get complicated, not to mention expensive.
But such is the world of cancer. Such is the world of healthcare.
I will let you know if I do indeed end up getting this test.
As is so often the case, time will tell if I do or not.
And as always, I am sharing about the BCI test because I want others to know about this option too.
Important Note: As I finished up this post, I did some re-checking and it looks like this test is recommended for stage I and stage IIa invasive, ER+ breast cancers. I was IIb, so it’s likely I don’t qualify after all. How did I miss that? Sigh… Oh well, maybe this information will help some of you make your decisions.
Update to the above update: (May 2017) It appears I would qualify, after all. I’m not sure if guidelines have been changed or if I misread before. Looks like stage llb would qualify if 1-3 nodes are impacted. If you’re interested in this test and aren’t sure, give them a call.
Have you heard of the Breast Cancer Index Test?
If applicable, have you had this test, or do you plan to?
If applicable, did you have the Oncotype DX test?
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Mary Baldwin
Tuesday 20th of September 2022
September 9, 2022
Hi Nancy,
My name is Mary Baldwin, and I am a breast cancer survivor. Your post is 5 years old, so I am not sure you are going to receive this -- but if you do ...
Can you tell me if you ever had the BCI test? If so, did it help you in making your decision? I received 6 months of chemo in 2018 and have been on letrozole for 4+ years (5 years April 2023). I saw my oncologist today for my 6-month checkup -- everything is good! -- and he wants me to stay on the letrozole for 7 years (it used to be 5, then it went to 10, now it's 7 -- sigh ...).
I did have the Oncotype test, but just barely qualified for that because my first tumor test was estrogen-negative, but the second test was very low positive. I have questioned the benefit of being on letrozole because my tumor was low estrogen-positive, but my oncologist keeps telling me that it's helping me "a little." I saw him today and told him that I want to discontinue the letrozole in 5 years, instead of 7 because of the side effects, and because I'm not sure how much it is really helping me. I asked him if there was anything new, and he mentioned the BCI test. He started to order one, but I told him I wanted to wait. I'm glad I did! If the test was $5,400 in 2017, I can only imagine what it is now. We have a high deductible insurance plan, so that is a factor.
Any information you can share with me about the BCI test would be greatly appreciated!
Thank you,
Mary Baldwin
Carolyn Davenport
Wednesday 9th of June 2021
Hi Nancy, I will have been on Letrozole for 6 years this October. I have many questions for the pharmaceutical industry (for which I used to work in clinical research) and oncologists concerning AI dosing. My primary question though is why do women receive the same dose regardless of age and weight? After reading a few studies that look at dosing questions (there aren't many), I decided to talk to my oncologist about taking my AI on Mondays, Wednesdays, and Fridays. She supported my decision (if it kept me taking it) and also suggested doing the Breast Cancer Index. It came back that I would benefit from 5 more years. The M-W-F dosing has made taking my AI more tolerable, so for now, I'll continue. While I was disappointed when I got my BCI results, I appreciated having one more piece of scientific data on which to make my decision. I'm hoping that as time goes on, research on the AIs will continue. Thanks so much for your site!
Nancy
Monday 14th of June 2021
Carolyn, I can't speak to the dosing as I have no expertise in that area. I do know that dosing was discussed at the recent ASCO conference. Not sure if this particular scenario was discussed though. I'm glad you're doing better with the MWF schedule. Sometimes, we have to do what feels best for us. Thank you for sharing.
Joyce
Wednesday 4th of April 2018
I was diagnosed 18 months ago with a 20mm, stage 2, grade 3 IDC with DCIS tumor, node negative, followed by lumpectomy with a .5mm negative margin. I did have the oncotype dx test, my result was 29. But I still declined chemo because the risk reduction was only 3% . At my age (69 at the time) I just didn't feel it was worth it. I've had a pretty rough time on AIs, and have seriously considered stopping them. My oncologist talked me into trying Tamoxifen, despite my age of 71 now. So far it's a little bit better, time will tell more. I'm certainly interested in the BCI test, because if something can tell if these meds are working or not, I'd be interested. I can't find out if Medicare covers it. I did read that it was approved in 2014. Can't find anything more current, and I know many things are not covered now that used to be.
Holly
Friday 22nd of January 2021
I feel fortunate the Oncotype test was available, and that it indicated chemo was not an effective option for me. From what I understand, years ago everyone got chemo. After a very long discussion with the Oncotype folks, they were adamant the purpose of their test was solely an indication of chemo efficacy, and not the recurrence score that is also provided. After a horrific experience with another AI, I’m almost a year on Exemestane and, to Joyce’s point, I’d like to know if the AI is working. The depression, weight gain, joint pain, osteoporosis, hair loss - is it worth it? If the AI goal is to reduce estrogen production, how do we track estrogen levels to ensure it’s working? Estrogen lives in fat, and I’ve gained 20 pounds, does that bring me to homeostasis, the same estrogen levels before the AI? I cannot find answers. There is currently encouraging research into determining the optimal dose for Tamoxifen vs. the ‘one size fits all’ approach in use. It would be interesting to have the BCI test before I begin an AI. Would that demonstrate the efficacy of an AI? We need customized/personalized AI regimens. Given how easily our collateral damage is discounted, and how fragmented my cancer care has been (prescribes the AI with no real concern about my osteoporosis!) some days I just want to pull the covers over my head. Even so, I try to remain hopeful we’ll get there, and am grateful to the women who participated in the research results we use today.
Nancy
Friday 6th of April 2018
Joyce, I am sorry you are struggling with side effects. I believe Medicare does cover the BCI test. You can contact the BCI via their contact link. I did and connected with a patient advocate person who was quite helpful. Good luck.
Becky Vasquez
Friday 11th of August 2017
Great to find your blog Nancy. I was so excited to reach my 5-year mark on Arimidex and be done with AI's. At my oncologist appointment a few weeks ago he stated studies show a slight benefit (average of 3%) of continuing to take a different AI for another five years (which for me would be Tamoxifen). 3% didn't seem worth the side effects so I told him I didn't think I wanted to continue. After reviewing my chart he said that based on my very aggressive cancer he would really like me to do the BCI test.....which I decided to do. Just got the results back today and the report stated I have a very high chance of recurrence (8.5 on a scale of 1 to 10.....anything above a 5 is considered high) and that staying on AIs for another 5 years would decrease my risk of recurrent by 16%. So, 5 more years on Tamoxifen. I can do hard things, right!?
Nancy
Tuesday 15th of August 2017
Becky, It's "nice" your oncologist wanted you to have the BCI test. Mine doesn't recommend it, but has agreed to order it for me if I want it. I've pretty much decided I am staying on my AI for the long haul, but time will tell...Thank you for sharing and good luck!
Kathy
Friday 28th of July 2017
Nancy, do you or any of your readers know of a way to assess risk after chemo? This is something I haven't been able to determine and to me that seems to be a part of the picture in deciding whether to continue on AI's. The Oncotype test, which I had, calculates risk of distant recurrence and my understanding is that it is based on women who'd had early stage, node negative cancers and had been on Tamoxifen for 5 years. I emailed my previous MO since my current HMO doctor is unresponsive or ill informed, and he said that for node negative early stage there is an undetermined reduction of risk from chemo, but no specific %. When I've read comments in the community section of BreastCancer.org, it seems most people think the BCI test is an indicator of current risk, but it also tests the tumor, it's not a reflector of the current state of your body, post chemo/AI's. What I'd like to see, and of course it doesn't exist, is a scan or genomic test which can give a current state status. BCI doesn't seem to be much more than an updated Oncotype.
I'm also digesting several online articles from Karuna Jagger & ASCO regarding the efficacy of 10 years. There is certainly not a consensus in the BC clinical world about this, and it appears most clinicians are lukewarm about the extension, given the lack of survival benefit. This does not make it any easier to decide.
Nancy
Friday 28th of July 2017
Kathy, The only thing I know about is the BCI test. My oncologist hasn't been enthused about doing it and I decided against it for various reasons, as of now anyway. He has agreed to order it for me if I change my mind. I am trying to stay the course on an AI, as this is what my oncologist and I have decided on. I'm doing okay on Exemestane (Aromasin). Not great, but okay. We discuss this at every appointment. I wish there were better, more clear answers to help guide us too. Tough decisions for sure.