Breast Cancer Indexing

steelersluver

So, I thought I was making my decision on whether to continue hormonal treatment beyond 5 years easier by having the Breast Cancer Indexing conducted. I assumed the results would be either High Recurrence Risk with High Benefit from Hormonal Treatment, or Low Recurrence Risk with Low Benefit from Extending Hormonal Treatment. However, what I got, was High Recurrence Risk with Low Benefit from Extending Treatment. My Dr did not seem to think there was any protocol for how to follow/treat patients with this result. Has anyone else had this? What did you decide to do, and how are you followed? Thanks in advance.

ShetlandPony

Ugh, that's a tough result to get, steelersluver. You might want to research clinical trials that are testing drugs for early stage that are currently only in use for stage iv outside of trials. For example, the PALLAS trial is testing adding Ibrance to hormonal therapy for stage II and III. (Although your prior 5 years on therapy may exclude you from this particular trial. Do ask.) If you are not already at a NCCN cancer center, you might schedule a second opinion at one to talk to someone who would be likely to know of any new developments for someone in your situation. If there isn't anything, I guess you just have to weigh your side effects against your tolerance for risk. You could say that what you have been on has been working for five years, so why not continue.

marijen

How does one get Breast Cancer Indexing

SpecialK

marijen - the Breast Cancer Index is an assay test, done on your original tumor sample, at the five year point of taking anti-hormonals. This test is done to help decide whether to continue taking these meds past five years based on the results, and your individual clinical characteristics. The test is offered by Biotheranostics and can be ordered by your oncologist. Here is a link, and an article from Breastcancer.org on it:

https://www.answersbeyond5.com/what-is-bci

http://www.breastcancer.org/symptoms/testing/types/breast-cancer-index-test

steeler - I too have the unfortunate high recurrence/low drug benefit result. My understanding is that we fall into only about 10% of test results. I don't believe that there is any protocol for how to proceed - even at an NCI center. I live 10 miles from an NCI center, have friends who reached their five year point while being treated there, and this test was not mentioned. Since the test was conducted on my original tumor material at the 4.5 year point, I immediately asked my oncologist for a PET scan, since we both had assumed that I was receiving more benefit from anti-hormonals than the test result showed. He thought it was a good idea, and it had been a couple of years since I had one. The scan showed no mets activity that was discernible at that time. In our discussion about how to move forward, my MO asked me if I felt I could remain on letrozole, which I answered in the affirmative. I do have side effects, but nothing I can't live with. His reasoning is that I have not recurred to date, and low benefit does not necessarily equal no benefit. I do have another friend locally who also had the high/low result. She went off anastrazole and then had her hormones tested. It turned out that her circulating estrogen levels were below the acceptable and anticipated level for a medicated patient, so she chose to discontinue taking anastrazole.

steelersluver

Thank you for the info. Where is information on the trials found? I'd like to look into that. I'm treated through Magee Hospital in Pittsburgh, PA.

steelersluver

I wondered about the PET as well Special K. I had 2 in the past due to known lung nodules (which showed minimal change), and I was inclined to think I'd like another if they can justify it. I'm glad to hear you had success. The lack of info out there is certainly frustrating. I also decided, at least for now, that "low benefit" is better than "no benefit". I'm not quite at the 5-year mark on tamoxifen, but I plan to stay on it or the AI. A lot to digest for now. I think I need to come up with a good list of questions and ask for an appointment....it was a lot to cover on the phone when I had one of my kids nearby.

SpecialK

steeler - do you mean trial info about BCI? For anyone reading it is important to note that this test is not currently FDA approved, nor do I think it is a mainstream test - I feel, from observation on this site, that many oncologists are not using any testing modality when recommending that their patients stay on anti-hormonal therapy beyond five years. Here is some trial info for BCI:

http://clincancerres.aacrjournals.org/content/clincanres/19/15/4196.full.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4700696/

steelersluver

Thanks Special K. I guess I meant a study or trial to participate in, but this will be good reading material that I haven't seen!

Hopeful82014

Steeler, a good, reliable site to search for clinical trials of any type is: cancer.gov/clinical trials.

marijen

Thank you Specialk

SpecialK

steeler - doubt there are any ongoing BCI trials or studies, I checked the clinical trials website and there are none that I could find. Trialing was done on whether or not to continue Tamoxifen for longer than 5 years, and also same for the AI drugs, but BCI was not integral in those trials.

marijen - I believe most pathology labs keep removed tissue for ten years. My surgery was in Nov. of 2010, and the test was done in Dec. of 2015.

steelersluver

Thanks Hopeful!

steelersluver

That's about what I figured Special K. One odd thing about mine, and a lot of why the result shocked me was that my Ki67 score was pretty low. It was also a Grade 3 though.

OG56

Special K I know we have spoken before regarding BCI however, I wanted to state that my oncologist has not ever done one of these tests before but because I had already done five years of Arimidex and then reoccurred three years after stopping he felt I was a good candidate for the test which came back High.

OG56

Special K I know we have spoken before regarding BCI however, I wanted to state that my oncologist has not ever done one of these tests before but because I had already done five years of Arimidex and then reoccurred three years after stopping he felt I was a good candidate for the test which came back High.

lala1

I'm reviving this thread in the hopes of getting some advice. I just got my BCI test results back and I'm one of those "10%". I have hisk risk recurrence and low benefit of continuing Tamoxifen. My score was 6.5 with a 7.5% risk of recurrence which my MO says in his opinion is the upper end of low risk rather than high risk. He thinks the cutoff number of 5 is too low but....you don't know till you know! He feels that I should stop Tamoxifen in Feb when I hit my 5 years but did admit that there is a margin of error of benefit of 1% so he said even though the test says no benefit, I COULD get the 1%. I do pretty well on the Tamoxifen but of course now I wonder if it's even been helping all along. My MO's opinion is that the Tamoxifen would take me from 7.5% recurrence risk to 6.5% (if that) and that I'd get much more benefit by exercising daily (which I do) which he feels could reduce my risk to somewhere around 4% and if I lost 10% of my body weight (which is how much I'd need to lose to get to optimal weight) he says I could see my risk drop to around 1%!! He's not a huge fan of all the meds if tests indicate they aren't helping. Anyone else get any suggestions on what else to do to prevent recurrence if hormone therapy gives no benefit? I feel that I need to do something!

dtad

lala1....I agree that diet and exercise are key to lowering recurrence rates. I also take several supplements that hopefully are helping me stay NED. Please feel free to visit the alternative thread if you want more information on it. Good luck to all.

Kath1228

Lala1,

I also got the dreaded, if not very puzzling, high risk/low benefit result. My score was 5.2 which is a 5.1% risk of distant recurrence in years 5-10 - with a low benefit of extended hormonal therapy. I am four years out today.

The cutoff score for high risk is 5.1 - so this puts me in the really low end of high - but it’s still high (sigh). I would have been so much happier with a score of 4.9!

My Oncotype was 11 - with a really low ki-67 (<5%). But my grade was a high end grade II and I was very highly ER/PR + (>99%) which had always been presented to me as a really good thing -the “best” kind to have because we have AIs and tamoxifen to drastically reduce our risk - now I find out that’s not true for me - great, now what do I do? Should I have done chemo when first diagnosed? Not according to my Oncotype - but apparently there is something more aggressive about my cancer that makes it more likely to return. Could it possibly be the fact that I was so highly hormone positive (the one thing they said was the “good”part)? They are realizing now that these type of cancers can recur many, many years later. I guess that’s part of the reason for the low benefit of extended therapy. Starting to feel like I was under treated at diagnosis - given this new info.....

Showed the results to my Florida oncologist (who ordered the test) - she didn’t have much to say about it. I’m not sure she entirely understands what the implications might be. Showed it to my Breast surgeon in NYC and all she said was “hmmmm, 5% recurrence risk - that is kind of high....” thanks for the help doctors!!!

My only other doctor to show this to is my MO in NYC. I don’t even think I want to show her because she’ll probably say “well you can go off - or stay on” - again, not helpful.....I really hate being in this nowhere zone....not knowing what to do or how to figure out what else I should be taking since the letrozole might not be doing what I think it’s doing....sorry, just venting a little here.....but like you, I feel like I probably need to be doing something in addition to what I’m already doing.....please let me know if you hear of any good ideas

lala1

Kath1228--I hear ya on all this uncertainty! I left a message for my BS hoping for some advice from him because he's usually very forthcoming with opinions and advice but he's so busy he had his nurse call me. She's been with him for decades so she pretty much spouts his opinions and she said they thought I'd be fine off Tamoxifen. She said he now mostly offers these pieces of advice for lowering recurrence risks in addition to, or in absence of, hormone therapy. Exercise 5 days a week for 30 min minimum, get as close to "ideal" weight as possible (but he's ok with a few extra pounds because he thinks too skinny can do more harm than good), eat 5-6 serving of fruits and veggies a day, take a high dose of Vitamin D (preferably about 5000IU daily) and take a GOOD fish oil that has a high amount of DHA/EPA combined, preferably about 1000+ mg. I take a Nordic Naturals brand that has that amount but you really have to read the label to make sure. A lot of them will say "lots of fish oil!" but not really have that much of the good stuff. He's also a huge fan of a periodic massage to keep our scar tissue busted up and keep us from getting too tight and hunched over. Then the last thing he says is yoga or some type of meditation 2 or 3 times a week to deal with stress which he feels is a big contributor to cancer. This guy is an old doctor who's head of the entire hospital here who's seen it and done it all. His mom died from BC when he was young and he's lived it and breathed it his whole life. He's about as up to date on research as one guy can be but still would rather see us all doing natural things to help keep cancer away. I trust him with my life (and so far he's done a great job!). I've got 2 more months of Tamoxifen and I plan to spend that time trying to reach that elusive mindset of just "letting go". I've got 54 years of Olympic caliber worrying to undo!

steelersluver

It sounds like there is no real consensus on how to follow the 10% of us. As a side note, I have not yet finished my first 5 years of Tamoxifen, and will be having a biopsy tomorrow on a lump I found in my armpit last week. Nodes already removed. It was BIRADS category 4A, which is better than other options, and the radiologist felt positive (would she tell me otherwise though?) about it.

lala1

Steelersluver----Sending waves of positive thoughts, wishes and prayers your way that all will be good!!

steelersluver

Thanks...just in the waiting pattern! They felt optimistic during the biopsy as well which is a good sign!

mgirl

I am glad I found this Thread. I had the breast cancer index test last Spring and in December it was five years I was on tamoxifen. Thankfully, my results came back low risk ofrecurrence and low benefit from tamoxifen. While I am happy with these results, I still am nervous. My oncologist said I could stop the tamoxifen after five years and she wouldn’t recommend me going longer than 7 years. She said if it were her, she would stop. I too feel that low benefit doesn’t mean no benefit. But there are other side effects with tamoxifen to consider. I don’t know why more doctors don’t offer this test.

Peregrinelady

Mgirl, do you mind sharing your stats? My BCI came back high risk and high benefit. Oncotype 12, 100% ER+. My dr. ordered it right after diagnosis which freaked me out. I think it shouldn’t be given until close to the five-year mark. I will try to stay on Arimidex for 7 years. I, too, am surprised that more oncologists don’t order this test.

mgirl

Hi Peregrinelady. I'm pretty sure I was 95% estrogen positive and 90% progesterone positive. My Oncotype was 17 so my doctors didn't recommend chemo. I'm surprised with an Oncotype score of 12 that yours would come back as high risk but at least it is high benefit.

My doctor said 10 years of tamoxifen in the beginning. Then later she mentioned the breast cancer index test and said if I was tolerating the tamoxifen well, that I didn't need to have it done. My legs started bothering me last year and I wondered if it was from the tamoxifen so i had her order the test. If i didn't ask for it, I don't think she would've ordered it. But now she is saying that I should go off of the tamoxifen based on the BCI result. It is all very confusing.

Peregrinelady

Well, mgirl, at least you have 5 years behind you. The latest studies say that 7 years is as good as 10, so I am aiming for that. I agree, if there is any benefit and the side effects are not too bad, it is worth it to keep taking the pills. Good luck, either way!

lala1

mgirl and Peregrinelady--- My Oncotype was 15 and I came back high risk but low benefit for Tamoxifen with the BCI test. I think the Oncotype is really just for chemo. I don't think that score correlates with the BCI score. I've been off Tamoxifen now for just 2 weeks but I find I'm still struggling with just the idea of being off. It makes me wonder if I'm doing enough, especially since I'm high risk (albeit the low end of high risk at 7.5%). But I do have an MO friend in another state that's considered one of the best and he says the BCI test is accurate to within .001% according to the studies, so I just keep telling myself that I won't get any benefit from it and could double my blood clot and stroke risk if I continued it. Boy, BC just keeps messing with the mind!!

Peregrinelady

Hi Lala, yes I get it. Damned if you do, damned if you don’t kinda feeling. But remember there are many, many women who did five years and are fine. It looks like we have similar profiles, kinda intermediate in terms of stage, with no chemo or rads, so hormonals are really our main treatment. I am on an AI so will see how long I can tolerate it. Just keep exercising, eating well, and try to put this behind you. Good luck!

mgirl

Lala, how are you doing with being off Tamoxifen? Are you feeling better about it? I see my doctor soon, so I will go over questions again. I wish it wasn't so confusing. You want to feel like you are doing everything, yet not doing unnecessary things that can cause other problems. Peregrinelady, I agree with you, exercise and try to eat well and put this behind us, but easier said than done. I wish there was more information out there on the indexing test. Why aren't more doctors recommending it? Hope you are all doing well!

Peregrinelady

Mgirl, I know it is hard not to think about all this. I, too, am surprised that there isn’t more discussion about BCI, especially since I just read an article that someone shared saying that it is very accurate. It basically said what Lala said that Oncotype is good for deciding about chemo and first five years, while other tests are better for predicting later recurrence. My score said that my risk is 9% with continued antihormonals and 30% without so hopefully my bones can take it. Tamoxifen and (other factors) gave me a blood clot so the AI’s are it for me. So have you decided to go off the Tamoxifen or not?

lala1

mgirl---Doing pretty good off the Tamoxifen. No more joint pain, hair has quite growing so much on my face which is good but getting acne again which isn't. For the first time in my life I have a fungal infection under the arm along the back of it. Have no idea where I got that from but a little athlete's foot cream and it's already doing better. Tamoxifen caused discharge for me which I thought would go away but it's actually worse. I think my body is just trying to find it's balance again. It took me about a year to find it when I started Tamoxifen so I figure it will take some time now. Haven't lost any weight which is a bummer. I exercise daily and watch my calories but I seem to be stuck where I am. Maybe once I balance inside, it will come off. I see my BS next month and I'm going to ask his opinion about supplements that act as AIs to see if he thinks I should go that route. I also want him to explain my BCI results in better detail. My brain lives for numbers and stats!