BRCA Gene Testing

I encourage you to get a referral to a genetic counselor. That likely will be covered, and it's important to understand what you are hoping to learn from the test.

For example, BRCAI and II mutations do run in families. But not everyone who has the mutation will get cancer. Depending on the study, the penetrance is estimated anywhere from 30% to 70% (so, in one study 30% of people with the gene were diagnosed with cancer at some point in their life, in another it was 70%). So, just because you have the mutation does NOT mean that you will get cancer. It does, however, mean that you are in a high risk group and should be vigilant about screening.

What if you have a family history of breast cancer, but you are negative for the BRCA1 and 2 mutations? Well guess what, you are STILL in a high risk group and should be vigilant about screening.

If you don't have a family history, you are in a lower risk group, but actually about two thirds of breast cancer cases are in people with no family history. So, you wouldn't learn anything from the test, but it doesn't guarantee that you won't get breast cancer. So, you should keep up with screening.

I'm not saying you should not be tested. It's a highly personal decision. What I am saying is that it is so important that you have a genetic counselor to help you 1) find out the answer to the question you really have. For example, maybe what you really want to know is what is my risk of getting breast cancer - which is NOT the same as asking "do I have the BRCA 1/2 mutation and 2) help you interpret the results of any testing you do have because it's not as simple as it may seem. Yes, you can send away to some online company to get the test done, but unless you have a background in genetic counselling, it will be very very difficult for you to figure out what that result means for you.

And, for the record, I'm not a genetic counselor myself, so I have no horse in this race.

Good luck to you.

ETA: After seeing your question yesterday, I would like to add that if your question is: does my mom have breast cancer - the genetic test DEFINITELY cannot answer that question.

We just talked about this in my family recently. My mom was diagnosed with breast cancer 3 years ago and her younger sister was diagnosed 6 months ago. The discussion was surrounding whether her two remaining sisters would get tested and whether the 1st generation girls (daughter's) would get tested. Out of the 5 of us, only 2 had insurance that would cover it. One person' insurance wouldn't cover it because a parent (mom) hadn't been diagnosed, my insurance and the other person's insurance said that because both cases occurred over the age of 65 yrs old, the BRCA test was pointless. One person asked what the cost was without insurance and was told "a couple hundred dollars." Ultimately, we ALL decided not to get tested. However, depending on your family history, you obviously may decide differently. None of us felt that we would have preventive mastectomies based on test results, and we all get regular mammograms.

Good luck! It was a big decision for all of us, as I am sure it will be for you.

Why not call your insurance directly and ask them if they cover it?

I did and my insurance covered it. It was just one of those things that I was told to have done during my DCIS treatment. It never occurred to me that it wouldn't be covered. I was told that 40 was young to be diagnosed with breast cancer, so that's why they wanted to test for BRCA. BRCA I and II both came back negative, so phew.

My insurance covers almost everything I've gone through, including acupuncture to help with radiation side effects. I'm now under the impression that I must have really good insurance...

I have had the BRCA testing done and my insurance covered it. My oncologist ordered it and it came back negative.

But do check with your insurance company about the cost. You can also ask what the cost is from your oncologist. The testing is done in Utah.

I don't know about options but they are probably out there.

Good luck to you. Just try not to over think things until your mom has received her results.

the other S.

I just spoke to my OBGYN about this (as I have a half sister who has breast cancer). He said they take your risk factors - i.e. how many close relatives have the disease - and determine from there your cost. He also asked me what I would do with the info... would I go to the extreme like Jolie if my risk factors were high. What if my risk factors were 50/50. Would knowing ease my mind, or give me more anxiety?

I chose for myself not to get the test, and just make sure I was consistent with my annual mammograms. Good luck! I do hear the pricing is coming down as it is becoming more prevalent and there is more competition to administer the testing. I'd talk with your OBGYN and your insurance carrier.

YOu can do it without a dr orders at https://getcolor.com/. Costs $249

Your breast center will determine your risk factor and let you know the ciost dependent on that result. Mine was $100 regardless if insurance paid, due to all the changes over the past two years with this particular testing and the monopoly. In fact the genetic tests can potentially now cover 49 mutations.

Updated

Your breast center will determine your risk factor and let you know the ciost dependent on that result. Mine was $100 regardless if insurance paid, due to all the changes over the past two years with this particular testing and the monopoly. In fact the genetic tests can potentially now cover 49 mutations.