Myriad myRisk - genetic test - anyone else do it?

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farmerlucy
farmerlucy Member Posts: 3,985

My onco suggested this today, so I did it. Results in a few weeks. It looks at 25 genes linked to 9 different hereditary cancers. Here is a link https://www.myriad.com/products/myrisk-hereditary-cancer-panel.

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  • Slappy-Squirrel
    Slappy-Squirrel Member Posts: 296
    edited August 2014

    Farmerlucy,

    I got genetic testing done 2 days after I was diagnosed. Negative for brac1 and brac2, but I was positive for the CHEK2 gene. That doubles my risk for breast cancer and raises my risk of colon cancer.

  • have2laugh
    have2laugh Member Posts: 132
    edited August 2014

    I also had this done last week. My insurance only covered BRCA 1 &2-which I had and were negative, as I thought they would be. I got call from genetics nurse last week that she had luck getting this test approved for another BCBS patient and felt with my family history of breast and other cancers she could provide adequate documentation of medical necessity. I have reached my out of pocket maximum for year so nothing to lose and my understanding is Myriad will not run testing until definitively approved by your insurance. I have been prepared we may be denied and have to appeal so could be a few month process. Crossing fingers it will be approved!

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2014

    interesting - I have not met my deduct so we'll see what they say. Not sure what I'll do w info. Slappy will you do any increased surveillance due to results?

  • Slappy-Squirrel
    Slappy-Squirrel Member Posts: 296
    edited August 2014

    I'm supposed to get colon checks    much more often.  I assumed I would have been getting boob checks every 6 months, but with the BMX hopefully no need to now. 

  • PoppyK
    PoppyK Member Posts: 1,805
    edited August 2014

    I had the complete screening done with Myriad. I was told that if my portion of the payment was over $375, Myriad would call me for authorization of payment prior to running the tests. By signing the paperwork that went with my blood sample, I agreed to pay up to that amount without additional authorization. My insurance did cover most of the cost of the test because I was considered high risk. I ended up being billed for about $275. I feel it was worth it, since it would change the choices I would make regarding my treatment. Luckily, my genetic test results were all negative.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2014

    Poppy - I'm glad your tests were negative. I had never heard of this test but apparently it is making the rounds. My brother in an onc on the west coast and he says he orders it for patients all the time and that it is a very good test. 

  • have2laugh
    have2laugh Member Posts: 132
    edited August 2014

    In retrospect, I wish I had tried for more involved screening at diagnosis but I was told my BCBS plan would only cover BRACA panel and I did have to pay 20% or $340 dollars. All of my doctors wanted more involved genetics but I couldn't take the chance I would be left with huge bill that my insurance wouldn't cover even on appeal. Now I know a bit more and I may have fought harder but at that time doctors at least wanted BRCA prior to making surgery choice so I went with what was covered. Really not huge difference in price from BRACA panel to this and would have been all inclusive so if I do get approval from the insurance company in the end they kind of hurt themselves- I just didn't know any better. If I can't get this approved one of my sisters will try on her insurance. Not sure it will change my screening practices but could have implications for my kids and other family members.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2014

    I'm BCBS too so we'll see what they say. Since PALB2 is in the news and a higher risk and this test covers it, it will be interesting to have it done.

  • have2laugh
    have2laugh Member Posts: 132
    edited August 2014

    farmerlucy-Thanks for steering me to articles on PALB2-I have been very busy last few weeks and I missed the news regarding this test. Really interesting. While I have BCBS, I work for a hospital system that has kind of a hybrid program which is very restrictive. I hope they will agree to cover this but we will see. I would like to know this testing for my daughters, especially my youngest who is not only inheriting my strong family history of cancers but also my husband's side. Out of five daughters, three of us have had breast cancer. I was diagnosed at 43, and two of my sister were diagnosed with IDC at ages 44 and 45, many other family members with varied cancer including our father w/ prostate cancer at 58. My husband's mother was diagnosed with breast cancer in late 30's and passed away at 43. I was diagnosed at first screening MRI and while I am grateful and encouraged by the progress being made in cancer treatment and diagnosis, I would be lying to say it doesn't scare the heck out of me when I see someone who started out with similar diagnosis and then relates recurrence and progression. 

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2014

    h2l - wow - that is some intense family history. I hope they can isolate something for you. .

  • Janett2014
    Janett2014 Member Posts: 3,833
    edited August 2014

    My signature explains my situation. I kind of expected something to show up, but it didn't. My BS is the one who said that I really should have the test. 

  • have2laugh
    have2laugh Member Posts: 132
    edited August 2014

    Janett2014- I am not sure anything will show up in my case either. It is likely they haven't isolated all the genes and environmental factors that may cause some families to have so many more cases of cancer. In my case-results could still sway me surgically. For now-have to wait and see. Best of luck!

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2014

    No go on the MyRisk test for me. Myriad is using the same code as the old Brca test so it looks like a duplicate test to BCBS. Myriad said they hope to have a new code for the "update" test this fall. I asked if they have a single test for the PALB2 and they don't, only the 25 gene test.

  • lekker
    lekker Member Posts: 594
    edited August 2014

    I've posted about it many times, but want to make sure people know about the Broca panel from the University of Washington.  http://tests.labmed.washington.edu/BROCA#BROCA_Ge...

    It looks like you can order the whole panel, or just a specific gene(s) to test.  I had this done last year before the "new" genes were added (already tested negative for BRCA including BART). I had no mutations in any of the 40 genes they tested.  It took three months for results but it is the most comprehensive panel out there.  More is not always better though - ask your genetic counselor what test is best for you and WHY.  

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2014

    I'm going to tell my onco about this. Thanks lekker - I remember now that you mentioned that in an earlier post. 

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2014

    I just noticed that the U of Wash has a brocb1 test that is for those of us who've had a previously Brca test. I'm going to call about pricing Monday. Just read the Palb2 risk can be almost as high as having a Brca mutation. 

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2014

    update - the Brocb1 ( full panel except brac test) for those of us who have had a previous brac test is $3350, just the palb2  is $1000. 

  • have2laugh
    have2laugh Member Posts: 132
    edited August 2014

    farmerlucy- I am also a no go from insurance for Myriad test. It has something to do with billing including BRCA in the name and fact that I am required to use Quest for labs-which I did for BRCA. So aggravating but geneticist spoke to Myriad rep and in October they will be offering "extended testing" which includes everything but BRCA. So basically they are renaming test for coding purpose. They will still offer complete Myriad MyRisk, this will just help others get coverage.Quest doesn't offer other testing so I may have chance of having this approved. I will have to have sample redrawn in October but we are going to try again as soon as they make this available. I asked how much it would be to have own my own and I was told about 3500 so not an option at this point. Be sure to check back in October.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2014

    Thanks for the info H2L! October it is unless my onc wants to try the Univ of Wash. I might be willing to shell out $1000 for the PALB2 - or maybe not.  Myriad sure could have saved everyone a lot of trouble by working out the coding thing beforehand. 

  • Straitlover
    Straitlover Member Posts: 124
    edited August 2014

    I had it done after I was diagnosed w/ a rare type of bc, plus I have a sis that was diagnosed w/ IDC last year and another sister who was diagnosed w/ imflammatory bc back in 2005 and passed in 2007. Also, my mother has multiple myeloma.  All came back negative.

    I am a state govt employee and we have a self-insured program, but they hire BCBS to run the program, so most docs consider me as BCBS. My claim was denied so far, but the EOB says they have asked for further info from the provider. I also signed the paperwork that Myriad would let me know beforehand if my co-pay was going to be over a certain amt, so if BCBS refuses to pay anything, I will not pay more than that the paper i signed said as I believe it was Myriad's responsibility to find out what BCBS would pay before they ran the test. If BCBS does decide to cover, it may not cost me anything since I have already met my max out of pocket for the year.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2014

    Straitlover - I'm sorry your family has been decimated by this beast. I hope you get approved. Please keep us updated.

    My DSD is going for her first digital mammo today - just the thought of it nearly brought me to tears. She has no major risk factors, but we all well know the impact the screening alone can have on our psyche..

    Here's a dumb question. Instead of a PBM coiuld the docs theoretically just take out all/virtually all the ducts (for the IDC risk)? I know dumb question but I had to ask

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited November 2014

    Here is an update RE: gap testing for those who've already had the BRCA test, but may benefit from the additional gene testing in the Myriad MyRisk test. BCBS has not accepted the code for the gap test, I don't know if they will or what, but you could choose to self pay for 24 mo @ $80, or pay the cash price of $1800. I've decided not to do it right now since the biggest impact would be a pos PALB2, and I'm already getting screening for the major cancers (ovarian would be the undetectable biggy, but since I'm not brca pos, my risk is prob close to normal regardless). At some point down the road DD is going to need that test, but we prob have a few years there, since she is just 24. 

  • Mommy2Six
    Mommy2Six Member Posts: 119
    edited November 2014

    I just had blood drawn for this test a few days ago. I was told 2-3 weeks it would be back.

  • vlnrph
    vlnrph Member Posts: 1,632
    edited November 2014

    I'm glad I did NOT have Myriad testing - they don't look for the rare mutation found primarily in a geographically unique group which members of my family carry. The Ambry & BROCA panels do include it and, once identified, our local medical college lab can screen blood samples for that particular defect and bills only a couple hundred dollars.

    Any company that took advantage of their monopoly the way they did for years may not deserve our business. The Supreme Court setting aside their patent 18 months ago has meant a lot of new work for geneticists but, in my opinion, it's to the good. 

  • Geo
    Geo Member Posts: 21
    edited December 2014

    My mother had breast cancer and she was positive for Palb2, I took the test and after waiting 3 weeks I got the news I was also positive.

    The insurance pay for everything, because we had a huge family history of cancer in our family. We went to UCLA.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited December 2014

    Very interesting fashiondgal007. Did you have the mx preventively? I hope your healing is going well.

  • Straitlover
    Straitlover Member Posts: 124
    edited December 2014

    I forgot to come back to update. My ins did finally cover the entire cost of my test. Most everything was negative. There was one mutation in there, but they don't know yet what it means. They are storing the info, and if it ever is linked to something, they will let me know. My sister also did it after mine, and she got the exact same result.

  • amber12345
    amber12345 Member Posts: 1
    edited January 2015

    Hi Straitlover, I'm happy to have found someone else who had one mutation show up on your panel that you don't know what it means. May I ask which company you went through? I had a full panel all come back negative except for one "Unknown Risk/Not well studied" Gene. My result was also not 100% Pathogenic, but somewhere on the varied scale of results. In short, I have no idea what it means. I have since done a ton of family research and have found very few people in my family who actually had breast cancer. I'm beginning to wonder why my genetic counselor even recommended I get the full panel in the first place and am questioning my vague result on the test. Also, waiting for insurance to cover it and it has been going on for months. I had the test done in August and it's January and it is still not resolved with insurance. It has been denied but I believe the genetics company is appealing. Very frustrating experience all the way around!

  • WotV
    WotV Member Posts: 6
    edited January 2015

    I had myRisk blood drawn Jan. 7 and haven't heard that insurance has rejected it, so I'm hoping it is being done now. I was told it would take up to 2 weeks to get authorization and then up to 4 weeks for the test. I'm at nearly 3 weeks now and I am desperate to know the results so I can move on to figure out what, if anything, is next.

    This was spurred by my sister's diagnosis of breast cancer last year, my grandmother's Ashkenazi Jewish heritage, my other grandmother's death from breast cancer at an unknown age, multiple family cancers: melanoma, pancreatic, uterine, lung.

    I'm playing with the numbers in my head constantly. I just want to know if I need to make any decisions and am constantly thinking about what decision I will make with a positive result...

  • vlnrph
    vlnrph Member Posts: 1,632
    edited January 2015

    For those of you who get a mutation report (especially one of unknown significance), please consider sharing your data within the PROMPT study. There is a post pinned to the top of this forum with more information.

    Four research institutions began this effort in autumn 2014 and will hopefully help define treatment guidelines, etc once more of us have pooled our results. Definite conclusions may not be derived in time to influence our personal decisions but the project should have benefit for the future!

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