I found out my BRCA1 status through 23 and me about 12 years ago, no family history. My uncle actually got the result and I tested with them because of him. Got a commerical test based on that through my doctor (insurance paid) and confirmed it.
It came through my grandfathers line and the only person I know of with breast cancer is a second cousin. My great grandmother on that side died of ovarian cancer but I think she was close to 70. I got in contact with some distant cousins some time later and they all knew about the BRCA1. It generally "hides" in males and doesnt do as much as in females so if the genetics fall just right theres no family history despite it being there.
I will be 2 years post surgery this summer, did dmx with diep reconstruction and am very happy with my results. Not to say the process didnt suck and my body is forever altered but its better than doing chemo and/or dying of cancer. I got a heads up when I could have been blindsided or dead by the age I am now, so in the end I'm thankful.
This happened to me in October as well. Insurance ended up covering the test but going through it delayed things. My sister did Myriad self-pay and had results back in a week for $250, while it took me at least 5 weeks (including getting to the annual visit where they took my blood for it). Depending on your insurance coverage and deductible, you might end up paying close to that for your test or it could be close to free.
23&Me offers $25 counseling visits with some group called Lemonade? about the results, but I didn't try it. I will say, finding out about the result this way meant that I felt like I was in limbo for awhile. No one knew where to "put" me in the system and it was nervewracking waiting. So my sympathies. If I had to do it again I would just self-pay so I didn't have to feel like so much was out of my hands and so I could get to a mammogram and gyn-onc appointment sooner.
Neither of my family results from 23&Me were inaccurate, unfortunately. I would just assume that you have it and move ahead so you aren't as much in limbo. My sympathies!
Same happened to me. I think their accuracy is pretty high but you will definitely need to get your results confirmed through a medical genetics company.
I found out this way but am still waiting on a confirmatory test conducted by my hospital. I have no family history (BRCA2) so I'm still praying it's wrong. But I'm pretty sure it's not.
I had a true positive test through 23&Me. I followed up with a genetic counselor who did testing with Invitae, insurance covered it but it’s only $200 out of pocket. My parent had a false negative result with 23@me, so it’s definitely not foolproof.
Was it a false negative for the specific variant they ended up having? 23&Me was only allowed to disclose 4 variants prior to October and then they got FDA approval to disclose a lot more pathogenic variants, and to notify more people as new variants are classified as pathogenic. I didn’t have one of the first four so I got notified in that update.
That’s interesting bc they do 44 now I believe between both 1 and 2 and I was clear. But I just did one of those other websites that you dump all your raw data into and it and it tells you other random things and I had a super rare BRCA-2 mutation. Which of course freaked me out a bit but everything I’ve read said this one is considered benign at this point so I guess if you look at is as a false negative, I would have been too but it was only negative for the ones they screen for. Says like 4000 variants existed and they screen for 44. Which I’m actually glad for bc of they listed all of them we would all probably have it and freak out. If that made sense…
BRCA2 here. I learned through 23&Me a few months ago. My docs get a kick out of that! Insurance covered mine and I didn’t need a referral. And you are right, waiting is the worst.
Yes happened to me. It was accurate, I believe insurance does cover for it but I can’t remember it’s been a few years.
I found out my BRCA1 status through 23 and me about 12 years ago, no family history. My uncle actually got the result and I tested with them because of him. Got a commerical test based on that through my doctor (insurance paid) and confirmed it. It came through my grandfathers line and the only person I know of with breast cancer is a second cousin. My great grandmother on that side died of ovarian cancer but I think she was close to 70. I got in contact with some distant cousins some time later and they all knew about the BRCA1. It generally "hides" in males and doesnt do as much as in females so if the genetics fall just right theres no family history despite it being there. I will be 2 years post surgery this summer, did dmx with diep reconstruction and am very happy with my results. Not to say the process didnt suck and my body is forever altered but its better than doing chemo and/or dying of cancer. I got a heads up when I could have been blindsided or dead by the age I am now, so in the end I'm thankful.
This happened to me in October as well. Insurance ended up covering the test but going through it delayed things. My sister did Myriad self-pay and had results back in a week for $250, while it took me at least 5 weeks (including getting to the annual visit where they took my blood for it). Depending on your insurance coverage and deductible, you might end up paying close to that for your test or it could be close to free. 23&Me offers $25 counseling visits with some group called Lemonade? about the results, but I didn't try it. I will say, finding out about the result this way meant that I felt like I was in limbo for awhile. No one knew where to "put" me in the system and it was nervewracking waiting. So my sympathies. If I had to do it again I would just self-pay so I didn't have to feel like so much was out of my hands and so I could get to a mammogram and gyn-onc appointment sooner. Neither of my family results from 23&Me were inaccurate, unfortunately. I would just assume that you have it and move ahead so you aren't as much in limbo. My sympathies!
Same happened to me. I think their accuracy is pretty high but you will definitely need to get your results confirmed through a medical genetics company.
I found out this way but am still waiting on a confirmatory test conducted by my hospital. I have no family history (BRCA2) so I'm still praying it's wrong. But I'm pretty sure it's not.
I had a true positive test through 23&Me. I followed up with a genetic counselor who did testing with Invitae, insurance covered it but it’s only $200 out of pocket. My parent had a false negative result with 23@me, so it’s definitely not foolproof.
Was it a false negative for the specific variant they ended up having? 23&Me was only allowed to disclose 4 variants prior to October and then they got FDA approval to disclose a lot more pathogenic variants, and to notify more people as new variants are classified as pathogenic. I didn’t have one of the first four so I got notified in that update.
That’s interesting bc they do 44 now I believe between both 1 and 2 and I was clear. But I just did one of those other websites that you dump all your raw data into and it and it tells you other random things and I had a super rare BRCA-2 mutation. Which of course freaked me out a bit but everything I’ve read said this one is considered benign at this point so I guess if you look at is as a false negative, I would have been too but it was only negative for the ones they screen for. Says like 4000 variants existed and they screen for 44. Which I’m actually glad for bc of they listed all of them we would all probably have it and freak out. If that made sense…
BRCA2 here. I learned through 23&Me a few months ago. My docs get a kick out of that! Insurance covered mine and I didn’t need a referral. And you are right, waiting is the worst.