Testing if Aromatise inhibitors work for you- you might be able to stop taking them

[Cu4281]

I recently had a test ordered that I found out was from a sample from my lumpectomy from 6 years ago. It was a test to see if Tamoxifen or any of the aromatase inhibitors work are helpful to take for my breast cancer. I would need to look up my exact diagnosis as I can’t remember exactly. I know it was hormone receptive invasive ductal stage 2. I had lumpectomy, sentinel node removed with 7 weeks of radiation. Then the Tamoxefin, plus others with knarly side affects. The worst was lexorole.

But of course insurance did not cover the test. It was $995.00. I held off a whole year before I had it done. My oncologist ordered it for me at my 5 year visit because she recommended that I stay on for another 5 years. I really did not want to. I did for 1 more year. But I figured it was worth it so I had it done a couple months ago.

Turns out it came back and it was not helpful so I was able to stop taking the Tamoxefin or any of those other drugs. I wish I would have known sooner that this was the case. I would not have taken any of those medications. I wish that would have been an option at the beginning. It seems that they want to cover you either way but, the medication are hard on people. Seems like the test , which is extremely expensive, should be something that could save a patient from using those meds and their side affects.

I love my Dr., but seems crazy that insurance won’t even cover a portion of the test. Just noticing that we must be our on advocates! I am frustrated that this is possible if you really don’t benefit from a treatment, why do they continue giving it to you? Seems like drug companies are the only ones that benefit. And insurance- don’t get me started on that.

😜

[Kazza1111]

Hi I am on exemestane and have never been told that you can have a test to see if they are necessary. I'm in the UK. Do you have the name of the test?

[blessedX6]

Do you know the name of the test? Was it oncotype? I agree we must be our own advocates.

[Cu4281 in reply to blessedX6]

Yes it is the Breast Cancer Index test. Aka BCI Test. see down below there was a link to the company that someone posted. It is San Diego, CA. Also, if you have limited income they can help with some of that costs. I did not qualify. But it is worth checking on it.

[Cooking_nut]

I would also be interested in the name of the test. I’m in the U.S. I’ve been taking Anastrozole but it’s just another aromatase inhibitor. I’m surprised that they kept your lumpectomy sample for 6 years. I didn’t know they did that.

[Cu4281 in reply to Cooking_nut]

healthunlocked.com/redirect...

[Cooking_nut in reply to Cu4281]

Thank you for this info!

[Vern3]

Back in 2020 I heard of a test called the Breast Cancer Index test. I went to my med oncologist wanting to take test because I was 5 years out and we were discussing medication options. My doctor said the test wasn't approved by the FDA (possible reason for insurance non-coverage) and didn't recommend it. I planned to take it anyway on my own, but I was diagnosed with another breast cancer (different from the first) before I could.

Perhaps this is the test you are talking about?

[9339williams]

Hi, I’m also keen to know what the name of the test is. I’m in the UK. Thank you!

[Cu4281 in reply to 9339williams]

Breast Cancer Index test aka BCI test.

[Cu4281 in reply to Cu4281]

healthunlocked.com/redirect...

[Cu4281 in reply to Cu4281]

healthunlocked.com/redirect...

[Burningrock]

Link to information on Breast Cancer Index test Available in US. I don’t know about availability in UK

googleadservices.com/pagead...

[Cu4281 in reply to Burningrock]

Yes it is the Breast Cancer Index test. Aka BCI Test. I thought that was it when I read your message but I did want to double check before I posted it.

[Cu4281 in reply to Burningrock]

Yes this is the place and they do have a little help but we make too much to get any assistance. It is well worth checking into I think. My Dr told me about it at the 5 year mark. This was when I found out about it. So, I feel like it should have been offered up a lot sooner during treatment rather than having to suffer thru side affects that apparently now I did not need to.

Ask questions - normal regular treatments that are standard for the type of cancer you might have, may not have to be taken. Tamoxefin is a $21.00 fee if you don’t have insurance. My husband got an extra CPAP machine that we had to pay for because insurance doesn’t cover. CASH price was $400 and when we looked back to see what we paid as copay with insurance it was nearly the very same! This is probably the most maddening to me that we pay a huge amount for insurance (more than our house payment) and it virtually covers nothing. It covers video visits for free. It did cover my cancer drugs prescribed but when you realize the CASH price. Well that is nothing…..sorry for venting. Insurance should allow Dr. A patient to make decisions for patient health. Not Insurance/Accounting. The older you get, the also factor that into what treatment you get. 🤔

[Cu4281]

I will look at my paperwork and post it.

[jawsbar75]

That’s unbelievable. I’ve found much ironies in our healthcare system throughout this experience. Much of the inexpensive treatments that heal the “source” of the problems are not covered, while most of the treatments that deal with the “symptoms” are.

[Cu4281 in reply to jawsbar75]

Breast Cancer Index test. Aka BCI Test.

[Cu4281 in reply to jawsbar75]

healthunlocked.com/redirect...

[Cu4281]

This test is the Breast Cancer Index test aka BCI Test.

[RLN-overcomer in reply to Cu4281]

Is this like a liquid biopsy test??😶

[jawsbar75]

I can go on for hours and hours on the medical / insurance industry and it’s misalignment with patient rights and treatment options. It’s too big of a problem, but we absolutely continue to share information with each other and take initiatives to better understand our options and continue to question the hospitals.