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BRAF mutation

Posts: 6
Joined: Sep 2012

I know only enough about this mutation do know that it is something to be concerned about having. I have read a few research papers, but have not started obsessing about it. Is it something that is done without requesting it, or must you demand it, or must you already be diagnosed with metastisis? I think I read that it must be done from tissue, as it was mentioned in the context of "the next time you have surgery..". Is that true or can it be done from blood?

Obviously it can be argued that knowing you have the mutation is just going to worry you, on the other hand, it suggests that you should be followed as closely as is possible.

I would like to hear what the specifics are about getting it done, and what people think about whether or not it is advisable to request it.

alapah's picture
Posts: 287
Joined: Oct 2009

It is a pretty expensive test as I understand, so insurance companies want a compelling reason to foot part of the bill. I have read where folks say it can be done with a blood test but i dont think that is the case. I had a BRAF test done in 2010 at the Hospital of the Univ of Pennsylvania to see I would be eligible for certain drug trials as I have lung mets. Around the same time of my thyroid cancer diagnosis I had a melanoma in situ removed from my neck. When the lung mets were detected we wanted to be sure that they were thyca and not melanoma and in order to determine that i had a lung biopsy done. The cancer researcher at UPenn had a lab conduct the BRAF v600e mutation testing and they used the tumor tissue taken from my lung.I believe it was done by the pharmaceutical company - i got the report but no bill as it was part of the trial pre-screening process.

In my case the tissue was removed firstly to detemine what type of cancer it was and not specifically to test for BRAF but i did ask about blood tests for it and distinctly recall that it wasnt possible. There may be general confusion because some other mutations, BRCA for example, are done using blood samples.

Not good to obsess over it but if a patient has mets or other cancers, it is important to know if the BRAF mutation is present as some chemotherapies have proven to be either more or less effetctive if BRAF is present. Knowing your status in a case of advanced thyca is key to navigating paths to most effective or at least the most promising treatment.

Hope that helps.

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