Breast Cancer Index

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 group.

Yes I did it. Insurance did pay for it. My results were basically high risk but no benefit from meds for years 5-10. Strange because my Oncotype was very low and with high ER+ the meds were deemed very helpful for years 1-5. Now I am not sure they were! No recurrence as yet! I am 7 years out from diagnosis.

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For any male breast cancer patients that may be following this thread… I had hoped to have this analysis performed, but was informed it is not approved by FDA for male breast cancer patients.

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@rpfricker

For any male breast cancer patients that may be following this thread… I had hoped to have this analysis performed, but was informed it is not approved by FDA for male breast cancer patients.

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I wish there was a little more energy put into to identifying ways to reach and help male breast cancer patients. So many forget that men get breast cancer too. Can you tell me more about your journey? Roadblocks to diagnosis or treatment?

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Oh wait I think I applied for financial assistance from the company. Sorry I forgot!

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@auntieoakley

I wish there was a little more energy put into to identifying ways to reach and help male breast cancer patients. So many forget that men get breast cancer too. Can you tell me more about your journey? Roadblocks to diagnosis or treatment?

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Appreciate your interest Chris.
My journey began a few months before my 61st birthday when I felt a hard BB sized pimple-like mass in my left breast. After a couple months of keeping an eye on it, I scheduled an appointment with my primary to address another unrelated issue and asked that he have a look at the “pimple”. Going in I suspected it may possibly be a problem as I had heard during Breast Cancer Awareness campaigns the caveat “and men can get it too”. That began the journey of navigating what is primarily a woman’s world, a world that I think many male breast cancer patients are embarrassed to be in (not me though, I’m in good company).
5 years have passed since my diagnosis. In that time some of the “roadblocks” have been sitting for over two hours in a room secluded from the women’s area in Mayo waiting to be cleared to go after a mammogram (they forgot I was there), issues with Medicare covering an annual mammogram (I suspect a coding issue by Mayo), and the problem with FDA not approving the Breast Cancer Index for men.
I am a volunteer on the Pink Ribbon Mentor team in Rochester, but of the 1% of all breast cancer patients, only two men over the past few years have reached out.

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@rpfricker

Appreciate your interest Chris.
My journey began a few months before my 61st birthday when I felt a hard BB sized pimple-like mass in my left breast. After a couple months of keeping an eye on it, I scheduled an appointment with my primary to address another unrelated issue and asked that he have a look at the “pimple”. Going in I suspected it may possibly be a problem as I had heard during Breast Cancer Awareness campaigns the caveat “and men can get it too”. That began the journey of navigating what is primarily a woman’s world, a world that I think many male breast cancer patients are embarrassed to be in (not me though, I’m in good company).
5 years have passed since my diagnosis. In that time some of the “roadblocks” have been sitting for over two hours in a room secluded from the women’s area in Mayo waiting to be cleared to go after a mammogram (they forgot I was there), issues with Medicare covering an annual mammogram (I suspect a coding issue by Mayo), and the problem with FDA not approving the Breast Cancer Index for men.
I am a volunteer on the Pink Ribbon Mentor team in Rochester, but of the 1% of all breast cancer patients, only two men over the past few years have reached out.

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Hi Rpfricker, good to know that you are on the Pink Ribbon mentor team and that you have chosen to join Mayo Clinic Connect as well. I will surely tag you to connect when other men join the online community with a diagnosis of breast cancer, like in this discussion:

– Male breast cancer: Anyone other men out there with breast cancer? https://connect.mayoclinic.org/discussion/mens-breast-cancer/

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@rpfricker

Appreciate your interest Chris.
My journey began a few months before my 61st birthday when I felt a hard BB sized pimple-like mass in my left breast. After a couple months of keeping an eye on it, I scheduled an appointment with my primary to address another unrelated issue and asked that he have a look at the “pimple”. Going in I suspected it may possibly be a problem as I had heard during Breast Cancer Awareness campaigns the caveat “and men can get it too”. That began the journey of navigating what is primarily a woman’s world, a world that I think many male breast cancer patients are embarrassed to be in (not me though, I’m in good company).
5 years have passed since my diagnosis. In that time some of the “roadblocks” have been sitting for over two hours in a room secluded from the women’s area in Mayo waiting to be cleared to go after a mammogram (they forgot I was there), issues with Medicare covering an annual mammogram (I suspect a coding issue by Mayo), and the problem with FDA not approving the Breast Cancer Index for men.
I am a volunteer on the Pink Ribbon Mentor team in Rochester, but of the 1% of all breast cancer patients, only two men over the past few years have reached out.

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I met a man who had been treated for BC at a meeting in Baltimore, and he was so generous with the fact that he was in the 1%. He found a way to laugh at what I always figured was kind of like being the first woman in a boardroom at the top of a company, they don’t even have a washroom for you. 😂 Thank you for sharing! Has the insurance thing been figured out for you? I hope you don’t mind me asking, because I am intensely curious, did they just hit you with everything because of no cancer index? Are you currently cancer free? Are the recurrence rates the same for men?

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@rpfricker

For any male breast cancer patients that may be following this thread… I had hoped to have this analysis performed, but was informed it is not approved by FDA for male breast cancer patients.

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That may be because these tests assess the effects of estrogen, and presumably men have less estrogen anyway. Women with ER- breast cancer also don't benefit- or have a reason to take the Breast Cancer Index test.

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@windyshores

That may be because these tests assess the effects of estrogen, and presumably men have less estrogen anyway. Women with ER- breast cancer also don't benefit- or have a reason to take the Breast Cancer Index test.

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I have a lot yet to learn about Breast Cancer. I've been on Tamoxifen for 5 years now. The way I recall the discussion with my oncologist was that if I could have participated in the Breast Cancer Index analysis, the results of that test would have had an impact on deciding to discontinue or continue taking the drug. Since I am not eligible to participate in that testing, it was recommended I continue taking Tamoxifen as long as I could continue to tolerate the side effects of the drug.

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@auntieoakley

I met a man who had been treated for BC at a meeting in Baltimore, and he was so generous with the fact that he was in the 1%. He found a way to laugh at what I always figured was kind of like being the first woman in a boardroom at the top of a company, they don’t even have a washroom for you. 😂 Thank you for sharing! Has the insurance thing been figured out for you? I hope you don’t mind me asking, because I am intensely curious, did they just hit you with everything because of no cancer index? Are you currently cancer free? Are the recurrence rates the same for men?

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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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@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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