How much faith should we put into DecisionDX Melanoma test?

Posted By
Roxanne218
3/10/2018 6:40pm
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Replies: 4

For the first time, the word "melanoma" was said to me in January 2018 after a biopsy was done. I went on to do the WLE with later receiving results of clear margins. Knowing this helped me have a happier, calmer attitude. Then 2 days ago, the DecisionDX results came in - a class 2b! I've done plenty of googling since then and learning a lot, some of which I wish I didn't know. I'm wondering how much faith I (and the rest of us) should put into this DX test. Seems as though doctors out there want to use it religiously.

Roxanne

Hi Roxanne, here is a link to last years Oncology meeting called ASCO (biggest gathering of medical oncologist and big pharm) there is a report that looked at these types of testes across all cancer types. It is pretty long and detailed but if you go to the full text version at the top of the page, then go down to the conclusion section you will get the findings and it kind of gives hope that Circulating tumor DNa tests will one day be used but at present they not ready. http://ascopubs.org/doi/abs/10.1200/JCO.2017.76.8671

There are several issues here - cost.  Not always covered by insurance.  Second, the validity of the test.  I think it has a lot going for it.  Third, what to do with the results.  That's a big deal.  If you are early stage but with a bad DRX result, you still can't do adjuvant treatment like you could if you were stage III/IV - it's not FDA approved to do that in the US anyway.  There is no protocol in place - and even if sites/docs decide they want to do additional testing, again they can't do any treatments until you progress.  So in some respects, it doesn't provide much benefit.  Will insurance companies pay for scans for stage I individuals based on the results of this test?  I'm skeptical.  Certainly, you can take comfort if your risk is supposedly less, but it puts you in limbo if your risk is higher because of the inability to treat aggressively.  I see it like taking a stage I person and making them stage II - higher risk but no ability to treat.   I still don't think this is a universal test based on cost and lack of ability to follow-thru.  There needs to be a "plan" for the results that docs and insurance companies and FDA agree with and we're not there yet.

Sorry, got a bit philosophical here, I'm not exactly sure what I'd do with the results of this test.  I am facing something similar with a protocol for testing for pancreatic cancer or glioblastoma or melanoma - from a genetic defect I have.  They know there are high risks with this particular defect, but there are no plans in place on what to do with the information.

Hello Roxanne218,

I was diagnosed back in Sept 2017 stage 1b.  Had SNLB and WLE on left ear and neck area.  Lymph nodes were negative so my doctor told me no other treatment was necessary.  I was worried that I may need some additional treatment or tests like a CT scan or chest X-ray at least for a baseline if I have a reoccurrence.  Anyway, I was able to get in to see oncologist Dr. Jason Luke at the University of Chicago and he said since my stage was 1b with no traces of melanoma in my lymph nodes there was really no other treatment I should do however he did suggest the DX test with a caviot being they do not yet know what to do with the results even if I tested positive.  He said perhaps a CT scan.  My insurance denied the clame and now Castle is appealing.  I was reassured that if they lose the appeal process, I will not be billed for the $8,500.00.

Your situation sounds almost exactly like mine!  So you had no scans....right?  I have been going to 3 month derm for skin checks, but I never feel like she is very thorough.  The way I understand it, we have a very low risk of spread.  Is that how you understand it?  My melanoma was on my scalp and lymph nodes were taken from behind my ears.  So scary even though I know I should be thankful.

Lori Whaley