Myriad myRisk - genetic test - anyone else do it?

My insurance just denied BART. I'll have to see if my oncologist can fight it, or thinks it's worth paying out of pocket.

I had the OvaNext test done - looks like these are relatively the same test just different labs? My test results were the most confusing - inconclusive variant of unknown significance detected.

Farmerlucy- I wondered if you ever were able to get approval for additional testing beyond BRCA 1/2. I am still trying, very aggravating. I recently changed jobs going back to my previous employer in large part due to issues last year with insurance. Now I will have access to all the services at our Regional Cancer Center since this is part of the hospital system I returned to. I gave the genetic counselor a call and hope to hear back from her this week. Going to try my husband's insurance which we are carrying for next three months and if no go will try my insurance when it kicks in. My niece who is 26 and had no current issues but clearly high risk due to our history was covered for MyRisk which came back normal. Just depends on the stipulations of your employer's insurance plan.

I was just diagnosed with cancer in my right breast. I have already fought BC 10 years ago in my left breast. Scheduled for a double mastectomy on Wednesday. I will also be having reconstruction during the surgery.

Because I have now had two separate cancers (BC does not spread from one breast to another) at young ages (41 and 51), my doctor suggested I meet with a genetic counselor to discuss my history and perhaps be tested. My uncle died from breast cancer and I also have some Jewish heritage on my dad's side of the family. Because of these risk factors, my insurance covered it. I got my results and I am positive for the BRCA1 mutation. Oh, how I wish I had done this 10 years ago! Information is power, so I say DO IT!

6-8 weeks following the mastectomies, I will also have my ovaries removed. Ovarian cancer is another HUGE risk with the BRCA1 mutation, and it is very sneaky...so don't want to mess around with that. Good luck to you!

Dear jglo, we welcome you to BCO but sorry to hear your story. Twice is two times too many!

BRCA1 is tough to find, but glad your insurance covered the testing. Glad you are taking it seriously.

If you are willing to let people know what type/s of BC you have had, people may find that of interest too.

Wishing you the best for your future surgeries, may they go well with quick recovery.

Please keep us informed of progress.

The Mods

farmerlucy- Just spoke with genetic counselor at my Regional Cancer Center. I was checking back to see if add on tests available yet. Since I last checked in the center made an agreement with a lab in California to run additional genetic panels for those that have already had BRCA 1&2. Apparently they had multiple women with Medicaid who were not covered so the lab agreed to bill insurance and if turned down the patient responsibility is just $100. I now have Cigna so not sure if they cover more than BCBS, kind of hoping they turn this down as I may have less out of pocket that way. Perseverance paid off so I am going in next week to sign consent and draw labs-hopefully third time doing this will be the charm!  I will update more info-like name of lab etc and exact test name as I find out but am excited that a year later I will finally get the full testing my doctors wanted me to have!

Congrats rleepac! I hope this brings you a little relief as you begin further treatments. Best of luck to you!

Hi everyone

farmerlucy I agree with unknown mutation. Interested in results but will likely go with double.

Darumama I think insurance companies tend to say no automatically, you MO may be able to provide needed info for full panel worth trying.

I get my results next week.

Barbie

I had blood drawn 3/9 for the myriad my risk panel. I have an affiliate of BCBS...I guess it is just wait and see about insurance coverage. I have my Dad with gastric cancer, his brother with colon cancer and their father with pancreatic cancer. My mom died of lung cancer. It seems my Dad's side could have a genetic link. Besides mom and grandmothers I have no female blood relatives....no sisters, aunts, cousins...

Ladies,

My mom was diagnosed with bc just about the same time I was - almost 66 - and passed away from it 3 years later in 1998.  Triple negative bc was not identified as a specific type of bc until 2006, but looking back I'm sure that's what she had. I remember her surgeon saying how unfortunate it was that it would not respond to hormone treatment (Taxmoxifen), so it was obviously hormone neg.  She had a great aunt who had died of breast cancer many years before.  I think there WAS a lot of cancer but it was not necessarily identified as such "back in the day," as people died of complications of the cancer spreading & it was difficult to find/be aware of the primary cause.  Plus cancer was only whispered about then.  My mother said they knew her Aunt Mary had breast cancer, because there was a very large tumor in her breast that was removed.

My dad passed away from colon cancer at age 70 many years ago, and at the advice of my gastroenterologist my kids have all had colonoscopies earlier than recommended.  Good thing, as my daughter had a pre-cancerous polyp removed at age 42, and one of my twin sons had 2-4 pre-cancerous polyps removed last year at age 38!  Both of them had to repeat the test in one year. These were the same type of pre-cancerous polyps I had removed, which are relatively rare - serrated sessile polyps.  I spoke to a geneticist who recommended that I get a full panel of genetic tests done, in addition to the BRACA 1 & 2 (negative), which was done when I was diagnosed a year ago.  The test results from OvaNext by Ambry, are just in and I tested negative for all gene mutations.  Yea!  OvaNext tests for 17 different breast cancer gene mutations.   There was a slight chance (less than 5%) that I would test positive for Lynch syndrome.  If you have it, there is a 50/50 chance that each of your children will inherit it, which means they need to be tested too.  So grateful this isn't necessary, as I would have had to have a hysterectomy as would my daughter - among other precautions. 

So who knows what causes cancer, and specifically breast cancer?  I think genetics and environment are both causes.  I had an extremely healthy lifestyle (daily exerciser and very low BMI) and I got it anyway.  I just attended a TN seminar on Friday where gene research was discussed and immunotherapy for breast cancer seems to be the hottest and most promising area of research to find a cure.  My geneticist and others agree that there are other gene mutations out there that just haven't been discovered yet. It's just a matter of time. 

Re paying for the tests.  The BRACA 1 & 2 tests were covered by insurance, but only because I had two relatives with breast cancer.  I think the criteria is different if I had been age 60 or younger at the time of diagnosis.  You may know that it costs no more to have the full panel of genetic mutations tested, as it does to just have BRACA 1 & 2 tested.  Had I known this when I had the BRACA tests done, of course I would have had a full panel tested.  The geneticist I worked with was positive that my insurance would not cover the OvaNext tests, but sometimes they cover it anyway.  If you have to pay out of pocket, it will cost $1,500 as opposed to the actual cost of $4,000.

Mommom-

 Glad to hear your results are negative! And you have caused me to rethink continuing to put off a colonoscopy. Three of my sisters have had tubular adenomas removed prior to age 50 so I have been advised to also have colonoscopy but admit I put it off with everything else this year. May need to just schedule this. In terms of the costs, I was very annoyed when I found out a full genetic panel was only $600 more than the insurance (BCBS at that time) paid for just BRCA 1&2. I would have gladly paid that difference and it would have cost me no more out of pocket for the year since I reached my max out of pocket with post op radiation. As I have said earlier, I think there needs to be a consensus statement by one or more of the major cancer surgical or medical groups outlining guidelines for genetic testing.

FarmerLucy- Third time was not the charm this week as I did not end up getting testing. The genetic counselor thought I already had new coverage through the hospital I went back to work at , which includes the Regional Cancer Center where her office and lab are located. I am sure I told her I had my husband's Cigna until May. Long story short-Cigna absolutely will not cover anything beyond BRCA 1&2-which I already know to be negative. I am going to go back in May when my new coverage kicks in. I did find out the name of the test. It is INVITAE-hereditary breast cancer, high risk panel. It test for BRCA 1&2, PALB2, TP53, PTEN, STK11, & CDH1. I will only be responsible for $100. It is unfortunate to wait and I do envy those that receive care in larger centers where more research is being conducted. Fort Myers, Florida is not exactly a big city! Take care and will post back in May.

FarmerLucy- I did look up the  INVITAE site and they have several high risk panels, which can be done for $1500. My family history seems to indicate an autosomal dominant pattern which is why she chose the panel for me but I also see an extended panel. It says one price for all tests so something else to consider. Take care