Topic: Medicare and genetic testing

Forum: Genetic Testing — ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, NBN, NF1, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53, mismatch repair genes (MLH1, MSH2, MSH6, PMS2, EPCAM), and VUS (variants of unknown significance)

Posted on: Sep 21, 2022 08:15PM

Posted on: Sep 21, 2022 08:15PM

rainbowmouse wrote:

I just was assessed at the high risk breast clinic and one of the recommendations was genetic testing. I'm all for that but I can't find anywhere whether Medicare covers it or now. I'm just wondering if anyone here has experience with that situation?


Thank you!

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Sep 22, 2022 11:06AM alicebastable wrote:

I had genetic testing because I've had other cancers besides breast, and my BS referred me to their genetic counselor. If I remember correctly, Medicare covered a kind of limited testing the was specific to the cancers I'd had, rather than covering a wide swath of possible mutations for any kind of cancer. The genetic counselor was part of the hospital/clinics I went to for diagnosis, surgery, and treatment - I don't know if Medicare covers independent testing places.

Ignore treatment info (below) which is a BCO glitch. Do not enter personal information on this site since they grossly mishandled a data breach.
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Sep 22, 2022 11:14AM lw422 wrote:

I think it depends on the type of cancer you have. Ask at the clinic if they can get pre-approval for the tests. I had genetic testing last year but Aetna Medicare Advantage refused to pay and I was never billed for it, either. If you have an advantage plan, contact them or check their website for details.

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Sep 22, 2022 02:14PM finallyoverit wrote:

Regular Medicare (red, white, and blue card) will not pay for genetic testing unless you have been dx with cancer. Medicare Advantage (part C plans) have their own rules and each can be different. If you have one of those plans, your best bet is to call them directly with the name and CPT code of the genetic test your doc wants to order

Dx 10/2011, IDC, Stage IIA, 0/4 nodes, ER+/PR+, HER2- Dx 5/2017, Stage IV, metastasized to bone
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Sep 22, 2022 02:17PM alicebastable wrote:

Oh yes, mine is an Advantage plan. In so many things, they do what Medicare would, so I forget to mention it.

Ignore treatment info (below) which is a BCO glitch. Do not enter personal information on this site since they grossly mishandled a data breach.
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Sep 23, 2022 01:06PM trilogy wrote:

I had Genetic testing because I am 49% Ashkenazi Eastern European Jewish. Was all covered. Not sure if it was because of BRACA or Cancer. Have Medicare & an Advantage Plan - paid 100% (and I don't have the gene mutation)!

Surgery 8/1/2022 Dx IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2-
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Sep 23, 2022 05:54PM - edited Sep 23, 2022 06:11PM by mavericksmom

I had genetic testing for 54 genes in 2020. Medicare would not pay for it, I think it was $100-$150 out of pocket for me. I dion't have any defective genes!

I highly recommend seeing a genetic counselor. Also. remember, whether you have defective genes or not, it doesn't mean you will or won't get breast cancer. I am proof of that! At the time of my testing I already had breast cancer twice in one breast, new cancers, not recurrences, and a strong family history, mother and two of three sisters. No defects, yet I was diagnosed again in August 2022 and I am having a mastectomy with reconstruction in October.

I doubt since you are old enough to be on Medicare, that there is value in getting tested. If you haven't seen a genetic counselor, that should be a first step. Make sure your insurance will cover that before scheduling. Medicare may not pay for prophylactic mastectomy, so if you are tested and find you have defective genes, it may just cause more anxiety. I know Medicare won't pay for reconstruction unless you have breast cancer.

Every woman is considered high risk as they age, the older one gets, the higher the risk. If I were you I would just be vigilant about getting yearly mammograms. Chances are at 65 or older and never having been diagnosed, you don't have a genetic defect. Again, your risk isn't an absolute prediction of whether or not you will be diagnose with breast cancer. BRCA positive women will normally get diagnosed before age 45-50.

The reason I had genetic testing wasn't for me, but to know if I could have passed it on to my children.

My cancer was caught very early all three times via mammograms so to me, having yearly mammograms with or withoutultrasound, is far more beneficial than genetic testing in older women.

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2-
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Sep 27, 2022 09:14PM rainbowmouse wrote:

Thank you everyone. I guess I should have explained my situation a little more.

I'm 46 somewhat young for any of this. I am on Medicare because I'm disabled.

i had an excisional biopsy in April and was referred to the high risk breast center after that. I didn't understand that I had something that was high risk so I thought I was just going there because I have dense breast and self-exams don't work well. So I was surprised to find that I have tissue in my breast that increases my risk to 1:3 in the next 25 years and 43% lifetime. I know that these numbers don't mean I'll get the cancer but it's still a lot to absorb. I'm starting alternating mammograms and MRIs every 6 months in November to catch anything that might occur early.

I have some genetic risk because my grandmother had ovarian cancer. I've been referred to a genetic counselor but nobody has called me back so I will have to try again tomorrow.


Thank you for sharing your experiences.

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Sep 28, 2022 07:08AM threetree wrote:

I would think that once you hook up with the genetic counselor they would know if you are eligible for Medicare coverage or not. I only ever looked up the coverage online (thinking of my two daughters), but the impression I got was that Medicare only covers it in very limited circumstances, but that getting it in your 40's was at least one of the criteria for Medicare coverage though.

I got mine in my mid 60's like my paternal grandmother, but according to what I read, they think that if it's genetic, you get it at a younger age. I have yet to see a genetic counselor, but again, I would think that they would know about the coverage via Medicare in your given situation.

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Sep 28, 2022 09:07AM specialk wrote:

Here is some info on Medicare coverage for genetic testing. It seems that you have to be diagnosed with cancer to be eligible for coverage for testing.

https://www.facingourrisk.org/support/insurance-paying-for-care/genetic-services/medicare-medicaid

There are some commercially available testing platforms like Color Genomics, that are reasonably affordable. Your physician can order testing, or their internal physicians can place the order for you. I think it important though to have access to genetic counselors who can explain any anomalies uncovered by this type of testing.

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+, IHC
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Sep 28, 2022 06:24PM k-gobby wrote:

I agree with the others. Check with your insurance company as they may have a company you can go to. I am being treated at the City of Hope. They are a research hospital. I was asked after a few visits if I would consent to a genetic test. I signed the papers and after a few wereks I received the result. Brca2.

I saw the geneticist yesterday after one year. I thanked him for what they do. Without genetics. My treatment would be very different and I may have made different choices.

Please look into a test. You have something that needs another look, and if it has a name, very often they have treatments focused on the specific cancer. Amazing. Please report back. We all want to support you.

Kathy g.

Chemotherapy 8/14/2021 Other Surgery 2/1/2022 Lymph node removal (Left): Sentinel; Mastectomy (Left): Skin Sparing; Reconstruction (Left): Tissue Expander Targeted Therapy 2/1/2022 Talzenna (talazoparib) Targeted Therapy 2/1/2022 Perjeta (pertuzumab)

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