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gudfred t1_isl419y wrote

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

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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