This is a safe place to share your experiences of others considering or on hormonal treatment.
Posted on: Sep 3, 2019 06:23PM
I am 5 and 1/2 years out from my diagnosis of ER+PR+HER- IDC, post BMX, chemo and almost 5 years of endocrine therapy. (I've tried them all and currently on Letrozole). Hate them all pretty much the same. Got my results of BCI ( not from doctor yet-I requested from the company and will discuss at my next visit which is soon. I will be her first! I pushed for the test and my insurance did cover it). My results indicated I am high risk for recurrence at 5-10 years (over 10%) but low benefit of continued hormonal treatment. I still need more info but curious about others who have had it done and the results and explanations. Of course, only 15% get a result like mine (high risk but low benefit of continued treatment.) I have a lot of thinking to do!
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Posts 1 - 19 (19 total)
Sep 3, 2019 09:21PM bcincolorado wrote:
My onco ordered it after I had done 5 years on tamox and 3 of Femara. Femara was zapping my bones so much I had shrunk 3 inches since I started it. She ordered the test and put me on Prolia. After results came back I was same a yours and my onco said I would be better off going off meds. I've been off since February. Still doing lab work and following with onco regularly for monitoring but quit meds 2 years early.
Sep 18, 2019 09:15PM herb wrote:
Same here I had a 7.8 score on BCI but showed no need to continue AI past 5 years. I see my oco in Oct. . I'll let you know what he said.
Sep 21, 2019 09:58PM Totallytubular wrote:
interesting test. I've not heard of this.. must find out mine. good luck with your research and decision.
Nov 11, 2019 03:14PM herb wrote:
I did get to see my onco last month. He said I am already having bone issues so this is more o a risk than my cancer. Test showed high risk 7.8 score and low benefit of taking after 5 years. Plus he said I did surgery, Chemo and radiation and the AI therapy Arimidex . There are no other treatment options will just have to see if it all worked. so this weekend I ran into a peer who quit taking her AI's 2 years ago, found out Mets to her liver.. So that scares the ....xxx of me... Fourth person I know found out Mets after doing all treatments and ends up stage 4. and 2 of them where stage 1 with no lymph nodes involved.
Nov 11, 2019 03:38PM EJF wrote:
It is very scary. I have spoken to my oncologist and we decided I will stop at the end of the year for 3 months and see if my side effects diminish. If I don't feel any better I will probably start again. I do not have issues with my bone density so that's not a concern right now. We will then continue to re-evaluate. A friend of mine passed away 6 months ago from Mets-she had been lower stage than me and diagnosed a few months after me which is frightening. But these side effects are miserable. I need to know if it's really the drugs at this point.
Oct 4, 2020 01:56PM herb wrote:
Update MY BCI score 7.8 and showed no benefit for continuing AI drugs after 5 years. In the next 30 days I will finish my 5 year treatment. I have developed osteopenia and I am sure that played in to the recommendation to stop at 5 years. I did 3 round of Prolia but Onco stopped that drug as I am coming off the AI drugs and he feels that my Osteo will subside once I am off the AI drugs. Wish me luck I feel like I am jumping out of a plane with no parachute... Its been 5.5 long years.. The end of treatment is in site...
Oct 6, 2020 05:53PM Rambros wrote:
I had searched the forums about the breast cancer index test and thought I’d add my information too. I had been curious about how it correlates to Oncotype scores:
BCI: 15.9% chance of distant recurrence in years 5-10 and High benefit from extended endocrine therapy.
Oncotype: score was a 19 with 12% chance of recurrence
My mother also had both tests. Her Oncotype was an 8 and her BCI showed 5% recurrence risk. Her tumor was smaller than mine with no nodes
Oct 6, 2020 06:45PM EJF wrote:
High benefit from extended therapy might be worth it. My chance of distance recurrence was 10.4% with low likelihood of benefit. I took 3 month break-felt much better, went back on in April, mostly because of COVID! I postponed my appointment with oncologist and I was nervous. Saw her in August-decided to keep taking it for now but may stop at end off year. It's 6 years total this month that I have been taking endocrine therapy. Their is still some benefit just not statistically beneficial. I am torn every day about what to do.
Oct 6, 2020 07:48PM Rambros wrote:
Yes, I’m going to keep going for the full 10 years since I’m still pretty young (42) and I’ve made it this far so I think I can handle another 4 years and 8 months.
I was surprised that my % went up after 5 years (compared to Oncotype) but nothing I can do about that. I hope if I continue with letrozole it will bring that % down closer to 10% like yours (Elf). I think that’s a good plan for you to try another year and decide after that. Good to hear that you felt better after a 3 month break. I dream of that day
Oct 6, 2020 11:51PM Totallytubular wrote:
congrats. scary but a relief. I have side effects and am counting down the months to 5 years. I am sure I will need more time on them but occasionally have insomnia.. mood effects. be well.
Oct 14, 2020 10:22AM herb wrote:
Note OcoDX is to detrmine if you need chemo based off the genetic DNA make up of the tumor.. It tells if your tumor will respond to chemo. The BCI test is also genetic DNA of tumor and it tells how likely you will benefit from taking AI hormone therapy drugs. It also looks at your risk factor of osteoperosis, which is the main risk factor to taking AI drugs. So if your risk of Osteo is higher than the risk of cancer. that palys into the decition to only do 5 years.
Nov 10, 2020 05:49PM stephilosphy00 wrote:
HI, ladies, I have been on hormonal therapy (Lupron and Aromasin) for almost 4 years. I just realized my onc had ordered BCI test for me to determine my late recurrence rate and my benefit of taking hormonal therapy for 5 extra years. I will need to pay at least $1000 out of pocket for the test.
I actually don't want to get the test, I think my young age and one positive node automatically put me on high risk of having late recurrence. I really want to stay on Lupron and Aromasin for at least 10 years or just as long as I can tolerate them fine. I am curious to know the results but I think end up it's all about luck.
Anyone here had declined BCI test and opted for 10 years of hormonal therapy? What's your experience?
Nov 10, 2020 06:41PM EJF wrote:
I was the one to push for the test. (I didn't have an Oncotype Dx-at the time it wasn't standard practice if you had any lymph nodes and I had 1 positive one so did chemo). My oncologist had never prescribed it before. I spoke with a rep from the company before asking my oncologist about it. I didn't have to pay for it. They have a cap of how much you need to pay. ( I don't have a deductible on my insurance) Talk to the company. They were very helpful. Things change all the time but that was the situation for me a year ago. I am still taking Letrozole and really hating it. I think I will take a 3 month break again in the new year and then try to finish my 7th year of hormonal therapy.
Nov 10, 2020 06:45PM - edited Nov 10, 2020 06:45PM by Rambros
Stephilosphy - when my doctor ordered the test I received a call from the company based out of California confirming that I won't owe anything out of pocket even if my insurance did not pay. They also asked for my 'ok' before going ahead with the testing. My insurance said they were out of network and applied it to my $10k out of network deductible so they didn't get any of the $5200 from my insurance and so far nothing billed to me either.
Dec 6, 2020 09:24PM - edited Dec 6, 2020 11:20PM by Reckless
I did the BCI test. My risk of recurrence is 4.9%, benefit of extended endocrine therapy is Low. My Oncotype was 19, which translates to 12% rusk of recurrence. My 5 years are up in June of next year. My onc was somewhat reluctant to order the test as she believes that it dies not have sufficient clinical history. She advises patients to stay on AIsbeyond 5 years, quality of life and bone health permitting. I am undecided yet because my osteopenia progressed since I started on anastrozole and I am concerned about moving to osteoporosis. Will consult with endocrinologist in 2 weeks if I should take Prolia, etc.
As for BCI insurance coverage, very disappointed. I originally spoke to Biotheranostics rep when my doctor ordered the test. She assured me that they will not charge me above the amount available under my deductible and that they have a $100 cap anyway. I told her that I also have coinsurance, she said that she did not see it in the system and only deductible applies, of which I only had $89 remaining. A few days after the test, my insurance company processed the claim in network and of course applied coinsurance. Total amount due from mewas $284. A few days later I received a letter from Biotheranostics asking to sign a right of representation so they can represent me in appealing the claim. I called and told them that the claim was already processed, to which they assured me that they need the paper from me to lower the amount due from me. I signed and mailed the paper. Last Friday I received a bill for $512! Turned out, Biotheranostics appealed the original claim. The insurance company reprocessed it as out of network and paid them more than originally intended. And I have to pay more too. Biotheranostics offered to me to apply for financial assistance, but I am concerned that after that they will bill me for even more than $512. Not sure what to do. Be careful with their patient's advocate - she is either inept or intentionally misleading. If anybody has an advice how to deal with this, please let me know.
Sep 11, 2021 06:08PM maxiemama wrote:
I had a similar experience with BCI company. Was quoted verbally on phone and in an email from the company that my part would cost $900. I was very cautious about doing the test because of the high cost and questioned more about the test and insurance coverage. I was assured that $900 was my out of pocket cost so my husband and I gave much thought into the cost/benefit of it and finally decided to proceed with the test based on that number. Following, my insurance company processed the claim and identified my out of pocket costs could be $3000. I phoned the BCI company again and reminded the representative I was quoted $900 and said they would appeal to my insurance company. After sending screen shots of my insurance claim at reqthe representatives request, I never heard back about the appeal. Nothing was noted on my insurance portal about the appeal. This last week I got a bill from the BCI company for $2300! Called again and my the contact said they werent responsible for what the insurance companies actual pay and that I was responsible for the $2300 balance.
If anyone is considering using this company I would suggest giving great consideration to my experience. If they cant get their part of the insurance straight you may well find yourself in a similar situation. The retail cost of this test is $5,000!
Sep 12, 2021 02:35AM - edited Sep 12, 2021 02:44AM by Veeder14
Sounds like patients need to get pre authorization in writing before agreeing to the test since the company sounds fishy.
I've got a question…If the sample is taken from the original tumor how does that give any different outcome by waiting the 5 years during hormone therapy than right after surgery? Thanks
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