borntosurvive
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Posts:52
I've been tested for EGFR19 / EGFR21 / ALK-1 and EGFR, which were all negative.
As I'm reading other posts on Inspire, I'm seeing all kinds of different mutations that people are tested for, and one poster said she was tested for 99 different mutations at Sloan Kettering.
Do different places, hospitals, doctors, countries, test for only some mutations? Because I'm in Sydney, Australia, wondering why I was only tested for 4?
Are these 4 the ones usually applicable to lung cancer? Or, do I tell my doctor that I want further tests?
Forums
Reply # - December 21, 2013, 06:03 PM
Reply To: Mutation testing
born, I don't want to pretend to know a lot about molecular markers and genetic testing but I can say with some certainty that there are just a few markers that have targeted therapies with which to treat. EGFRs mutations can be treated with tarceva and gefitinib. ALK translocation and ROS1 can be treated with crizotinib. There are trials looking for bettering treatment for those with KRAS. Others are tested usually at centers that are doing research on genetics such as Memorial Sloan Kettering.
I'm not sure how prevalent the testing for ROS 1 is but it is a molecular mutation that you didn't mention above.
This post is an excellent overview of molecular markers
http://cancergrace.org/lung/2010/10/10/overview-of-molecular-markers-in…
This post is a video post excellent also
http://cancergrace.org/lung/2013/08/15/riely-which-patients-markers-mol…
And this with further reading links with promising targeted therapies that may have trials in yours area, http://cancergrace.org/lung/2013/07/18/doebele-most-promising-targeted-…
Here are the several pages of links to various posts and videos on the subject for a further look.
http://cancergrace.org/lung/category/lung-cancer/general-lung-cancer-is…
I hope that helps,
Janine
Reply # - December 22, 2013, 10:54 AM
Reply To: Mutation testing
The ones that are the current standard of care are EGFR and ALK for patients with a non-squamous NSCLC. For those with squamous NSCLC, no mutations are clearly standard of care.
Yes, we are in a transitional time when there is a wide range of tests being offered; the problem is that the vast majority of the tests being offered have somewhere between dubious and no demonstrated value. In this sense, it's like cable companies offering an extra 50 or 500 or 5000 channels, but if they are all in a language you don't understand and cover topics of no interest to anyone, they don't add any value. One of my concerns about "multiplex" (multitest, simultaneous) testing is that the vast majority of the results you get back lead to no good idea of what to do with the results, and/or they tempt us to recommend treatments for which the clinical data to support it are weak or non-existent, typically making decisions for treatments based on a slight insinuation of possible benefit based on preclinical testing or vague theory, but also associated with significant costs and potentially significant side effects.
So in this case, when the number of evidence-based, "actionable" results are few, I think this becomes misleading marketing -- there is no evidence that more is better here, and it may well lead to worse results if you make incorrect assumptions about the efficacy of treatments chosen based on a weak premise.
-Dr. West
Reply # - December 22, 2013, 02:04 PM
Reply To: Mutation testing
Thank you both for getting back to me. I found both posts to be helpful and informative towards answering my question.