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

Cu4281 profile image
21 Replies

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.

😜

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21 Replies
Kazza1111 profile image
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 profile image
blessedX6

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

Cu4281 profile image
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 profile image
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 profile image
Cu4281 in reply to Cooking_nut

healthunlocked.com/redirect...

Cooking_nut profile image
Cooking_nut in reply to Cu4281

Thank you for this info!

Vern3 profile image
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 profile image
9339williams

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

Cu4281 profile image
Cu4281 in reply to 9339williams

Breast Cancer Index test aka BCI test.

Cu4281 profile image
Cu4281 in reply to Cu4281

healthunlocked.com/redirect...

Cu4281 profile image
Cu4281 in reply to Cu4281

healthunlocked.com/redirect...

Burningrock profile image
Burningrock

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

googleadservices.com/pagead...

Cu4281 profile image
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 profile image
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 profile image
Cu4281

I will look at my paperwork and post it.

jawsbar75 profile image
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 profile image
Cu4281 in reply to jawsbar75

Breast Cancer Index test. Aka BCI Test.

Cu4281 profile image
Cu4281 in reply to jawsbar75

healthunlocked.com/redirect...

Cu4281 profile image
Cu4281

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

RLN-overcomer profile image
RLN-overcomer in reply to Cu4281

Is this like a liquid biopsy test??😶

jawsbar75 profile image
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.

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