Topic: Genetic Testing Decision Making & Barriers You've Faced?

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

Posted on: Aug 11, 2021 10:57AM

Posted on: Aug 11, 2021 10:57AM

moderators wrote:

Hi all,

We're looking for members to share their experiences with making decisions regarding getting genetic testing and any barriers you have faced in doing so. If you'd be willing to share your story, could you please post here or send us a PM? Thanks in advance!

To send a PM to the Mods: community.breastcancer.org/my/...
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May 24, 2022 04:07PM k-gobby wrote:

Cancer research hospitals often ask if you want to be in a research study. I said yes at COH. My test was no cost. I think $250.00 is reasonable, same lab as mine. Over time, many more will get genetic tests. Too much is at stake.

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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May 24, 2022 05:23PM exbrnxgrl wrote:

michele,

Of course, there are different plans available through Kaiser.My plan paid for complete genetic testing and counseling and did so several times over the last 10 1/2 years as more tests became available. So my guess would be that it is not Kaiser that didn’t pay for it but the fact that your plan didn’t cover it. I should also add that I did have a family history and belong to an ethnic/religious minority that is at higher risk for BRCA genes and a few other mutations.

Dx IDC, Left, 4cm, Stage IV, Grade 1, ER+/PR+, HER2-
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May 24, 2022 06:41PM kidi919 wrote:

I had genetic testing a few months after dx. Lab called me and asked if the insurance didn't cover it would I pay the $175 to do the testing. I said yes and they asked me to sign a paper allowing them to work with insurance company. I agreed. I tested negative. Fast forward about 4 months and I get an EOB from my insurance saying they would not pay the $4620!!!! the gene company was billing them for the tests. So I paid the 175. That is just what's wrong with for profit medical care. It was a company out of California. ( I guess we can't name names on here). My girls were tested for BRCA but I don't know if they had to pay anything or not. If my brain fog clears I will remember to ask them.

Dx 9/17/2019, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Radiation Therapy 1/14/2020 Whole breast: Breast Hormonal Therapy 3/8/2020 Femara (letrozole)
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May 25, 2022 01:11PM k-gobby wrote:

it is ridiculous. Genetic testing g has proven results. One day I was to get the Red Devil chemob4 times every few weeks. The next day I got a callmy genetic test was positive and my chemo plan was changing. 12 weekly of Taxol/Carboplatin and then the 4 Red Devil. No genetic testing? No treatments for thr mutated gene I carry. Anything up to $500.00 is worth our lives. Sounds like a law will get passed one day as our right to treatment of breast cancer and its affects.

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)

Page 9 of 9 (84 results)

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