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Odeeum t1_isk0v0z wrote

Reply to comment by AdmiralKurita in The Race to Make a Vaccine for Breast Cancer by AdmiralKurita

Wife has BRCA1...opted for double mastectomy a few years ago. No regrets as it was a huge stressor given her family history of cancers, specifically breast.

We haven't tested out daughters yet but they're aware so this is really cool news.

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deedeebop t1_isko556 wrote

Interesting. How does one go about acquiring the test for BRCA1 or BRCA2… is it expensive? Or is there a way for it to be covered by ins? (Woman, 46 asking.)

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Unbr3akableSwrd t1_iskruy0 wrote

Usually, if you have a family history, you can and should be tested. I believe that insurance company usually paid for it because earlier catch of the illness can save them more monies down the road.

Or I could be totally wrong.

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gudfred t1_isl419y wrote

I work as a cancer genetic counselor. If you meet criteria for testing/insurance coverage, then in my experience most patients end up paying $100 or less out of pocket. There are a couple labs where you can also self-pay (and avoid going through insurance) for a flat rate of $250.

I strongly encourage people to try and meet with a genetic counselor, as I've seen PCPs either order the wrong test or do it through a lab that costs more than necessary. Also, when other providers decide to order testing and it comes back positive, they often refer to a genetic counselor to discuss the implications of results anyway. There are genes other than BRCA1 and BRCA2 that we test for, but not every test is the right fit for each individual so it's important to understand your testing options and the pros and cons of those options.

Many genetic counseling clinics offer remote telehealth appointments so you don't necessarily need to travel to a hospital to be seen. Here is a good resource to locate a genetic counselor in your area: https://findageneticcounselor.nsgc.org/

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deedeebop t1_islsy28 wrote

Hey thank you so much for this valuable insight! I really appreciate that you took the time to tell me (all of us) about that. I will have to look into this. There is no real family history here but I’m still curious… and as far as criteria… is that what would qualify? A family history of some kind?

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gudfred t1_ismmhwb wrote

The criteria are factors of your personal and family history that are suggestive of a hereditary cancer syndrome. They help guide who has a higher likelihood of having one of these syndromes as they are typically quite rare and we want to focus our efforts on people with an elevated chance of benefiting from the results. Unfortunately, insurance often uses the same criteria for determining whether they will cover genetic testing.

That being said, I do see patients in clinic who don't meet these criteria but are still interested in testing and they often just pay the $250. If someone really wants the information, I'd rather they do it through a genetic counselor who can fully explain the testing as well as any results that come back than to find some other way of doing it themselves and possibly getting untrustworthy results, results they don't know how to interpret, or even the wrong test for what they were trying to learn.

I've had some patients who had gone to significant lengths to get testing done themselves and then an odd result comes up... They still end up in our clinic and may even need to get confirmatory testing at a reputable lab to confirm their initial result! My job isn't to be a barrier to testing, it's to empower patients by helping them understand what genetics can and cannot do when it comes to their risk of developing cancer. Hope that all helps!

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deedeebop t1_isn930n wrote

Wow, one thing I can say it’s that you’re an amazing person! Thanks for sharing and thanks for helping so many people.

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Odeeum t1_iskt8eh wrote

It was more difficult than it should have been tbh. My wife had a leg up as her aunt had a complete genetic screening a few years befire that flagged it in the family...this allowed my wife to use her paperwork to take to her PCP and get her own test done for it.

Cancer was prevalent on both sides of her family so it was a spectre lurking in her mind her whole adult life. She didn't hesitate as soon as the test came back positive...it was actually quite a relief and has zero regrets. The surgery was fully covered by our insurance as well as the follow up plastic surgery for her replacememt boobs.

This was several years ago though and I believe it's much easier to get tested. I think 23andMe actually has added it to the list of things they can test now too.

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gudfred t1_isl4mfz wrote

I also replied to the above question, but read your response and figured I'd mention that 23andme does not currently have FDA approval for BRCA1 and BRCA2 full gene analysis, only for the Ashkenazi Jewish founder mutations. A lot of people think they did BRCA testing through 23andme but it wasn't actually comprehensive and more testing may be recommended. Sorry to hear that your wife had difficulty in getting her genetic testing done!

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Odeeum t1_isln2bf wrote

Oh awesome, thanks for the info...I signed up with 23andme really early on and loved it but haven't kept up the last couple years. Thanks for thr kind words, I can only assume things are much easier now to get tested.

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