amberstewartParticipantHi! I had a 0.3 mm melanoma removed in June of this year. I went to my derm for a follow-up skin routine. They asked if I would be interested in having DermDX testing done. From what I understand, it tests your biopsy site to see if you are high risk or low risk for metastasis. Does anyone have any experience with this? My worry is that it will come back as high risk for metastasis I’ll have severe anxiety. I had so much anxiety after the initial diagnosis, but it has gotten better over time. My doctor explained it as a test to see treatment/how closely they monitor me. Any advice from anyone who has had experience with DecisionDX?
- December 11, 2019 at 7:49 pm
jetdoctor67ParticipantI had the DX test done back in 2017 when I had melanoma (node negative) removed off my left ear 1.5mm. My oncologist said they still did not know what to do with the results and it did not change anything for me. Only make sure your insurance covers it first as it pricey at $8500.
- December 12, 2019 at 1:28 pm
- December 12, 2019 at 1:39 pm
Sounds like you got your melanoma removed super early and have adjusted to LIVING with your diagnosis!! Not an easy task, so that is great!!!
There have been quite a few discussions about utilizing “Decision DX” over the past couple of years (the search bubble here is your friend):
There are more, but…. The questions I would be asking are these:
Is the test covered by insurance? IF the test says you are at high risk – what type of follow up is your doc going to recommend? If your doc is going to recommend some regimen of scans, are those going to be covered based on your Stage and the results of this test? If not, are you willing or able to pay for them?
Bottom line, researchers have been looking for years for some way to definitively follow melanoma patients at every stage in a way that is meaningful for their follow up and treatment. In the opinion of most – we are not there yet. There are many reasons – consistency of results, standardization/validation of the tests themselves, FDA red tape – and many more. There are some excellent “liquid assays” (blood tests) that measure circulating tumor DNA that really do detect bits and pieces of melanoma in our blood that can thereby demonstrate whether that DNA is present at all or at an increasing or decreasing level – helping docs and patients determine a diagnosis as well as whether the patient is responding (or not) to a particular therapy. Here are a zillion articles on the topic: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=blood
As far as Decision DX in particular – that’s not exactly what they test. Further, it is hard to find valid data about it other than what Castle Biosciences (the company that makes the test and makes money off it) puts out. Not to say it’s bad. Just say’n.
Making choices about our melanoma care is hard. Melanoma is not fair. However, with what you’ve shared in your post, with healthy sun habits and good derm follow-up, you have most likely dealt with the last of your melanoma. However, if that is not the case, there are many legit, effective treatments for melanoma should you ever need them. You have every reason for a hopeful, melanoma free future, whether you choose to do this test or not.
I wish you my best whatever you decide. Yours, celeste
- December 17, 2019 at 7:16 pm
I had the DecisionDX test done in 2018, but I’m the kind of patient that’s more anxious about what I don’t know than tackling the process of dealing with what I do. My surgical oncologist suggested it, citing similar reasoning to yours, and said that the expense would first be run through my insurance, would most likely be denied, and then Castle would pick up the tab ($8,500). (They didn’t do a test on the site though, rather sent the tumor to them.) That is what happened, but it took a year of back and forth between BCBS and Castle. I didn’t have much involvement except in opening the mail, and in the end it was all resolved with no expense on my part. My insurance did not pay. The test results came back in less than a month and determined I was at a low risk for recurrence (knock wood) ~14% over 5 years. Hope that helps!
- You must be logged in to reply to this topic.