Breast Cancer Index: What's your experience?

Posted by virginiae @virginiae, Nov 1, 2021

Has anyone done this test to determine if staying on aromatase inhibitors beyond 5 years is advised for you? https://www.breastcancerindex.com/
Did your insurance cover it? What was the recommendation? Thx

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@rpfricker

I'm new to Medicare this year, and it's been a challenge with them declining coverage for the annual mammogram, and prostate/PSA testing claiming the procedures were not coded as medically necessary. Mayo resubmitted (re-coded) the claim for the mammogram, and Medicare finally paid. The PSA has still not been covered.
I am, I believe, still cancer free after 5 years. I still need more education, so not sure about any difference in recurrence rates for men vs. women. I thought I had seen at one time that it may be higher in men, but not certain on that.

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In this context, I am an old timer as the BC index did not exist when I was diagnosed. They just knew I was under 40 with aggressive her2+ er+ so they hit me with everything they had available. Herceptin had not been approved yet for frontline therapy so I got that later with my first recurrence.
I am still too young for Medicare but I have tricare so it basically pays the same except that my prescription coverage is rolled in as well.
I can only imagine someone at Medicare looking at your annual checkup and scratching their head about PSA and a mammogram. Hahaha There were some coding issues with my husbands care at Mayo as well but they resubmitted and it was paid.
I am sorry you have to get mammograms that has to be uncomfortable. I would hope that Mayo has a really good mammo department. You are fortunate to be able to continue your care there.
I have a great doctor now, but in the beginning, not so much.
Did you have other treatments besides tamoxifen? How are you tolerating it?

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@coleenyoung I’m very sympathetic to the needs of male breast cancer patients; clearly there is a need for support and sharing and it’s unfortunate that they aren’t eligible for the Breast Cancer Index, but I would still like to hear from other patients who have experience with it. Thanks.

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@virginiae

@coleenyoung I’m very sympathetic to the needs of male breast cancer patients; clearly there is a need for support and sharing and it’s unfortunate that they aren’t eligible for the Breast Cancer Index, but I would still like to hear from other patients who have experience with it. Thanks.

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It isn't that men aren't eligible. The Breast Cancer Index is a test to determine whether more than 5 years of hormonal therapy is of benefit. Women whose cancer is estrogen-negative, like men, have no reason to take the test. In other words, anyone not on Tamoxifen or an aromatase inhibitor has no reason to do the Breast Cancer index.

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@windyshores

It isn't that men aren't eligible. The Breast Cancer Index is a test to determine whether more than 5 years of hormonal therapy is of benefit. Women whose cancer is estrogen-negative, like men, have no reason to take the test. In other words, anyone not on Tamoxifen or an aromatase inhibitor has no reason to do the Breast Cancer index.

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My oncologist looked into getting the test for me (I've been on Tamoxifen for 5 years). We found out that the FDA has not approved the test for men. Therefore no insurance coverage either

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@rpfricker

My oncologist looked into getting the test for me (I've been on Tamoxifen for 5 years). We found out that the FDA has not approved the test for men. Therefore no insurance coverage either

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Do men's adrenal glands produce estrogen? Just curious.

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@windyshores

Do men's adrenal glands produce estrogen? Just curious.

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ER/PR + here.... it's dangerous to cite Google searches sometimes, but will offer this here:

Do guys naturally produce estrogen?
Although it's called the female hormone, a man's body also makes estrogen. A healthy balance of estrogen and testosterone is important for sexual growth and development.

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@rpfricker

ER/PR + here.... it's dangerous to cite Google searches sometimes, but will offer this here:

Do guys naturally produce estrogen?
Although it's called the female hormone, a man's body also makes estrogen. A healthy balance of estrogen and testosterone is important for sexual growth and development.

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I asked because aromatase inhibitors inhibit estrogen produced by the adrenals. It seems that the issue of males with breast cancer is not getting enough attention and there should be an Oncotype for them.

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I just started anastrozole and saw a wonderful lecture on it. My oncologist will do the test and said it would be covered as it will be necessary to see if I am benefiting from the drug. If the test shows that it does help, I will continue to take the drug for 5 more years for a total of 10 years. I wish you the best. These decisions and advocating for yourself is so important.

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I did end up getting the test. My insurance did not cover it, and I could not shell out the $5K for the test so I applied for the company’s financial assistance and they covered the cost. I was having a lot of issues with Anastrozole and dreaded that I might be advised to stay on it. The test showed I had less than a 3% likelihood of recurrence and there was only a very modest additional benefit of staying on the medicine. So my oncologist was comfortable letting me come off it. Slowly over the course of 6-9 months I’ve gotten my quality of life back and that aspect has to weigh into the decision. The test just informs the decision you and your oncologist make. Best of luck.

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@virginiae

I did end up getting the test. My insurance did not cover it, and I could not shell out the $5K for the test so I applied for the company’s financial assistance and they covered the cost. I was having a lot of issues with Anastrozole and dreaded that I might be advised to stay on it. The test showed I had less than a 3% likelihood of recurrence and there was only a very modest additional benefit of staying on the medicine. So my oncologist was comfortable letting me come off it. Slowly over the course of 6-9 months I’ve gotten my quality of life back and that aspect has to weigh into the decision. The test just informs the decision you and your oncologist make. Best of luck.

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@virginiae I am puzzled by your comment about the BCI only showing "modest additional benefit" from extended AI's. Have they changed the test? I was told by the company that it is a yes or no, nothing in between, no gray areas. So either benefit or no benefit.

My results were no benefit but high risk. My last choice!

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